Connexions Spring 2018 by Connexions

conneXions www.fetalhealthfoundation.org

linking the medical & personal worlds

embracing the scar

a shoulder to cry on... after the storm: welcoming a rainbow baby things to know

before your surgery noah's story: 1

saving the sickest baby connexions

spring 2018

of fetal syndromatic issues

24 hours a day, every day of every year… You are our top priority. As a parent, you want to give your child the best possible start in life. Our dedicated and experienced physicians at the Johns Hopkins Center for Fetal Therapy, a division of the Department of Gynecology and Obstetrics, specialize in seamless transition from fetal diagnosis and treatment of complex diseases in the womb to coordinated newborn care and beyond. Our comprehensive treatment approach to all complications of monochorionic pregnancies, including twin-to-twin transfusion syndrome (TTTS) and twin anemia polycythemia sequence (TAPS), offers outstanding results across a wide variety of severities. We offer management for even the most severe cases of

congenital diaphragmatic hernia (CDH). Our ability

to offer innovative fetoscopic tracheal occlusion coupled with exceptional postnatal management provides lifesaving treatment in these difficult circumstances. We are also the only center on the East Coast offering

fetoscopic fetal spina bifida repair. This minimally invasive

surgical treatment provides both fetal and maternal benefits. Our personalized approach with the use of -D printing allows us to create a customized model preoperatively for each patient which helps us to develop an individualized care plan for each family.

Visit us at hopkinsmedicine.org/fetal-therapy Or call us: 410-502-6561

OTHER FETAL CONDITIONS WE TREAT:

• • • • • • • •

Selective intrauterine growth restriction (sIUGR) Twin reversed arterial perfusion (TRAP) Lower urinary tract obstruction (LUTO) Aortic valve stenosis Fetal chest masses and hydrothorax Fetal anemia Fetal hydrops Fetal growth restrictions and placental dysfunction • Fetal tumors • Amniotic band syndrome We work every step of the way to coordinate a continuum of care that offers the highest chance of survival and quality of life.

a look at the inside... 7

embracing the scar: facing fear to realize the dream of family

spotlight on 2017 research grant recipient: fetal pulmonary disease

special feature: one surgery, two babies + a life-saving outcome

after the storm: welcoming a rainbow baby

choosing the right OB: when being picky is okay

special feature: a minnesota mom reflects on the in-utero surgery that saved her twinsâ&#x20AC;&#x2122; lives at midwest fetal care center

a shoulder to cry on

top tips for creating the perfect ecofriendly nursery for your babies

special feature: bioengineering alternative to open fetal repair spina bifida

top things to know before your surgery

special feature: expert care from the cincinnati fetal center

keeping your pelvic floor healthy?

help babies sleep: duplicate the feeling of being in the womb

something new + sweet in minnesota

healthy meals in the kitchen with nurturme

fully living in spite of prune belly syndrome

noah's story: saving the sickest baby in the hospital

31 46

cover photo courtesy of Sherilyn Craig Photography

58 connexions

letter from lonnie... Fifteen years ago, my wife was undergoing fetal surgery to save our twin daughters from Twin-to-Twin Transfusion Syndrome. One year later, we wanted to do more and created a fundraising 5K run/walk. Through that original event, we met some amazing families along the way and all banded together to create what is now known as the Fetal Health Foundation. Knowing that some 800,000 pregnancies every year would be affected by some form of a fetal anomaly or syndrome, we knew there needed to be an organization that could support those families diagnosed with advocacy, awareness, education, and support. Our mission was simple --- to provide HOPE. Our task was nothing short of having to move mountains and I am grateful to all of those that have helped bring us to where we are today, and especially to those that have never wavered as we work side-by-side in bringing families the HOPE they so desperately are looking for. Today, the Foundation is helping to provide HOPE to families all over the world. Thousands of families are being provided information and support about their particular diagnosis. Thousands of families are being connected through the Foundation to the worldâ&#x20AC;&#x2122;s leading doctors in fetal medicine to provide that hope. Each year, the Foundation awards the Brianna Marie Memorial Research Grant, grant money that is improving treatments and thus outcomes on various fetal syndromes. Now in its third annual publication, Connexions (the only publication that connects researchers, fetal surgeons and doctors, families going through or have gone through fetal syndromes, and the general public) is the leading fetal syndrome advocacy publication, all related to providing HOPE. Connexions is designed to be a support, education and awareness mechanism. In here you will find stories of hope, amazing research findings, support articles about dealing with a fetal diagnosis, or sadly in some cases, a loss. We are sadly a large community that has gone through a fetal syndrome or anomaly, but one that is silent and often little known about. I do hope you will take the time to share your stories with others, and if you wish, us as well, as this is how we become a louder voice in the fight against fetal syndromes. Blessings and HOPE. ~lonnie

Contributors: nicole esquibel kim bow lonnie somers sherry habbe jessica reale talitha mcguinness

Connexions is an annual digital and print publication of the Fetal Health Foundation, a nationally registered 501(c)(3), non-profit organization located in Colorado.

You can follow the Foundation through monthly newsletters and social media.

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adler konrath 11/1/2016 ttts jaxon blayne jenkins 9/16/2004 luto

nicholas dane raymond smith 12/11/2004 ttts

kallie beth palmer 7/29/2006 ttts

you are

not alone...

fetalhealthfoundation.org

brianna marie hissam 3/16/2012 fetal hydrops

photo courtesy of gloria robertson photography

embracing the scar: facing fear to realize the dream of family by talitha a. mcguinness

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A fetal syndrome diagnosis often results in anything but a normal pregnancy. There can be numerous doctor visits with ongoing scans and monitoring, and more often than not, even highly specialized treatment to correct the situation, giving the baby or babies a fighting chance at a healthy delivery. Mom to TTTS survivors Dylan and Jace, Rachel says, "I'm absolutely in love with this picture because it shows my (surgery) scar." This scar is a badge of honor and a constant reminder of what a family went through to try and have their dreams realized through the starting of their family. While not always the outcome we hope, the scar serves to remind us how hard we fought to bring life into the world. Rachel Grubbs was diagnosed with TTTS at 17 weeks and 4 days, had a cerclage put in immediately due to pre-term labor signs, and flew to Los Angeles for the laser ablation procedure performed by Dr. Ramen Chmait at USC-Childrenâ&#x20AC;&#x2122;s Hospital. After her checkup when she arrived, it was discovered that she was at Stage 3 and the surgery was scheduled for the next day.

"We were expected to lose our donor baby (baby A). His heart rate had dropped after surgery, they found a bit of fluid on his brain, and he was left with about 10% placental share," said Rachel. "That was extremely hard to hear because I never thought it would happen to us. My husband, DJ and I spent some time together at the beach before we flew home, just thinking and telling our parents what to expect in the

This scar is a badge of honor and a constant reminder of what a family went through to try and have their dreams realized through the starting of their family. next month, which was to lose a heart beat." Two days later, the couple had one of the scariest ultrasounds, but they still had TWO normal heartbeats! Their donor baby's heart rate went back up and there was no visible fluid on his brain. He had even started making fluid and they could see a bladder again. Fast forward to 31 weeks, Rachel was still pregnant with the twins who were very active and healthy, despite their journey to get to this point. The donor baby even caught up in size. With no signs of early labor, Rachel was happy to have made it so far. Doctors were hoping to keep the pregnancy going until about 36 weeks. "I cannot come close to explaining how grateful and

blessed I was to still have these two," said Rachel. "We know how lucky we are to be survivors in this and not a single day goes by that we take it for granted." Against all odds, the Grubbs finally got to meet their little boys, Dylan and Jace on February 15th of last year. Dylan was the donor baby weighing in at 3lbs. 15oz., and Jace as the recipient baby weighed 4lbs. 10oz. Rachel's advice is to never give up hope. "We knew we couldn't control anything, and we put it all in the universe's hands." "My scar is still visible and it reminds me of a very scary time in our lives," said Rachel. "All is well now and I will forever embrace my scar."

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Dylan and Jace turned 1 year old in February. They are happy and healthy; they are fighters and they are survivors. In a similar turn of events 13 years ago, Sherilyn Craig learned of a problem with her twins and went to visit Dr. Ruben Quintero, then at St. Joseph's Women's Hospital in Tampa, Florida. She was there to learn if her twins had TTTS, and just 4 hours later, she was wheeled back for surgery. Fortunately for her, she had a successful fetoscopic surgery and her twin girls Brianna and Brooke were born healthy and well. Celebrating their 13th birthday later this year, Sherilyn reflects on her experience and on her surgery scar.

scar, I smile with pride and thank God for leading me to the doctor that had the tools and knowledge to save my babies' lives." Another of Dr. Quintero's patients, Elizabeth Carrerra, had surgery almost eleven years ago this May, to save her girls from TTTS at just 18 weeks into her pregnancy. "I carried our girls to 35 weeks. We had one in the NICU for 2 weeks, and one in the Cardiac ICU for 6 weeks," said Elizabeth. It was a very overwhelming and scary time to say the least. "I used to look at the scar...I was proud of it and it reminded me of the miracles that my girls were and still are." When Elizabeth and her husband decided to have

another child, the baby's delivery was also via c-section, and when they cut out her old scar, they also cut out the TTTS scar.

"As hard as it was to walk through that time, the little scar was a reminder of our outcome, one I had only hoped and prayed would be as wonderful as the one we have now," said Elizabeth. "I donâ&#x20AC;&#x2122;t have my scar anymore, but I do have a happy and healthy seven year old little boy. He was a wonderful redemption of what I felt I lost during my twin pregnancy and delivery. The mental scars are still there, of course, and the whole experience changed me in many ways. Parenting our three children is the greatest gift, and any scars that I have accumulated have been well worth the unbelievable love and joy that I have received."

"I have a tiny scar from the scope/tool he used to cauterize the common blood vessels. For me, I am one of the lucky ones. My babies survived," she said. "My scar is a reminder of the strength the three of us had to have. Itâ&#x20AC;&#x2122;s a constant reminder of how life can change suddenly. Life is not guaranteed."

So many families learn of their diagnosis and surgery within days of each other. There is little time for anything other than trying to save the lives of your unborn children. Sherilyn said, "That day in February, I was shown how delicate life is. When I see my

images taken during fetoscopic laser photocoagulation for ttts in 2005

Talitha has been a part of crafting much of the creative side of the Fetal Health Foundation for more than 12 years. Married for 17 years and mom to four, with her identical twins being TTTS survivors, she has experienced the spectrum on pregnancy and childbirth. She loves being a resource for other families on their journey with a fetal syndrome.

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2017

research grant recipient Award to Study Life-Threatening Fetal Lung Complication The recipient of the 2017 Brianna Marie Memorial Research Grant, awarded annually by the Fetal Health Foundation, is a team led by Dr. Ali Gholipour of Boston Children’s Hospital and Harvard Medical School. The group’s focus will be on improved imaging for the prenatal prognosis of incomplete development of the lungs, a lifethreatening complication that is associated with several fetal syndromes. Funding for the research grant was made possible by the Brianna Marie Foundation and the Kaiser Family as a memorial to their daughter Izzie. According to Dr. Gholipour, an assistant professor in radiology at Harvard Medical School and the director of translational research in the radiology department at Boston Children’s Hospital, optimal management and treatment for affected infants hinges on timely identification of fetuses with the condition and accurate prediction of pulmonary function at birth.

“We are developing new quantitative MRI techniques to evaluate fetal

Dr. Gholipour's team: Dr. Judy Estroff, associate professor of radiology at Harvard Medical School and division chief of fetal-neonatal imaging at Boston Children’s Hospital’s department of radiology; pediatric surgeon Dr. Terry Buchmiller; neonatal pulmonologist Dr. Richard Parad; Dr. Oncur Afacan, a Harvard Medical School radiology instructor and director of operations of the radiologic research imaging core at Boston Children’s Hospital; and Dr. Simon Warfield, professor of radiology at Harvard Medical School and director of radiology research at Boston Children’s Hospital

lung development based on water diffusion and capillary perfusion in pulmonary hypoplasia,” explained Dr. Gholipour. “Our aim is to translate these findings into precise predictors of pulmonary outcomes at birth.” The annual research grant was created in 2015 with a significant donation from the Brianna Marie Foundation in honor of Brianna Marie Hissam. Diagnosed with fetal hydrops, a condition caused when abnormal amounts of fluid build in two or more body areas of a fetus or newborn, Brianna Marie was born March 16, 2012, and only lived 15 hours. Funding for the 2017 research grant was increased to $50,000, thanks in part to a $15,000 contribution in honor of Izabel Grace Kaiser who was also diagnosed with fetal hydrops and became an angel on November 28, 2012. It is the desire of both the Hissam and Kaiser families that more research can be done to better understand fetal hydrops and diseases associated with it to provide hope to families in the future. “It’s so inspiring to us to witness the amazing results these medical teams have produced with the funding from the grants,” says Lonnie Somers, Founder of the non-profit Fetal Health Foundation. “Each of these discoveries has the potential to provide hope to thousands of families around the globe.”

To learn more about the Fetal Health Foundation's Research Grants, visit fetalhealthfoundation.org. connexions

Brooke & Brianna, 12 TTTS Survivors

Bryce, 2

Spina Bifida Survivor 10

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Ramsey, 5

Spina Bifida Survivor

Everett, 14 mos. TTTS Survivor

Khloe, 11

TTTS Survivor

Kaleb, 2 mos.

Oligohydramnios Survivor connexions

Keeping families together when they need each other most. The Center for Fetal Diagnosis & Treatment at Children’s Hospital of Philadelphia is the largest and among the first fetal programs in the world dedicated to improving the outcome for mother and baby. Learning that your unborn baby has a birth defect is a life-changing experience. We provide unrivaled comprehensive, family-centered care in one location. From advanced imaging to confirm the diagnosis to perinatal management and fetal surgery to counseling and support services, our team is here for you every step of the way. A decade ago, we revolutionized the birth experience for healthy women carrying babies with known birth defects by opening the Garbose Family Special Delivery Unit (SDU), the world’s first birthing unit located in a freestanding children’s hospital. The SDU allows mothers to undergo fetal interventions and deliver their critically ill babies in one of the top children’s hospitals, providing those with immediate medical/surgical needs access to the most advanced, innovative and successful treatments. Since opening, this remarkable facility has transformed the birth experience for more than 3,400 deliveries, keeping families together when they need each other most. Our provider team will partner with you and your physician to create the best plan of care.

Connect with us today to learn more. 1-800-IN UTERO (468-8376) • fetalsurgery.chop.edu

Kathryn & Anna, 11 TTTS Survivors

Bridget, 3 TTTS Survivor

Cade, 11 mos. TTTS Survivor connexions

special feature

One Surgery, Two Babies + a Life-Saving Outcome: MWRI’s 9-90 Research in Action special editorial submitted by our partners at Magee-Womens Hospital of UPMC

When Regina Shoup’s doctor told her she had twin-to-twin transfusion syndrome (TTTS), she was terrified. She had already known her twins shared a placenta, but since the chances of TTTS were so small—there are only about 4,800 cases in the U.S. each year—she hadn’t worried. But here was her doctor, handing her a pamphlet on a rare disease and unable to offer much guidance. Ms. Shoup understood the gravity of the situation. Left untreated, TTTS is often fatal to the fetuses. Because the twins are connected to the same blood vessels, one ends up donating blood to the recipient. While the donor’s growth is stunted, the recipient is engorged with blood and fluid. Both situations are dangerous and if one dies, so does the other. Without the proper treatment, Ms. Shoup could lose her twins.

Discovering Magee for The First Time

After entering Magee-Womens Hospital of UPMC, she found the hope she sought. Backed by Magee-Womens Research Institute (MWRI), the hospital features MWRI’s revolutionary 9-90 research: A focus on diagnosing and treating disease within the nine months in the womb for a better 90+ years of life. Because Magee is a women’s hospital run by obstetricians and gynecologists, all options are considered with the mother top of mind. Fetal therapy, which holds many benefits for the fetus, but many risks for the mother, can be conducted much more safely under Magee’s guidance. At that very moment, there was no safer place for Ms. Shoup and her children than at Magee. When she met the medical staff, she was reassured, especially when she met Dr. Stephen Emery, MWRI’s specialist in TTTS and the hospital’s clinical director of Fetal Medicine. As a member of the International Fetal Medicine and Surgery Society—the original organization dedicated to fetal therapy—and the North American Fetal Therapy Network (NAFTNet), a collection of 33 academic centers in the U.S. and Canada, Dr. Emery is tapped into a large

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network of specialists. These connections are part of what makes TTTS treatment at Magee so successful. “It’s not me treating TTTS by myself,” Dr. Emery says. “It’s me connected to a much broader, collectively wiser body of professionals.” These connections are especially important when treating a rare disease like TTTS; because it’s so rare, there aren’t many publications to consult for guidance. With these professional groups, Dr. Emery is changing the way TTTS is detected and treated. A study he conducted with NAFTNet found evidence against the common wisdom that letting TTTS sort itself out is a viable option. Their research found that in the absence of treatment, 70% of cases actually get worse. Another study Dr. Emery was a part of in 2011 determined it’s best to catch TTTS in Stage 1, and the best way to catch the disease early on is to screen for it via ultrasound every two weeks. “Thanks to our medical progress, we don’t need to stand by and watch when something goes wrong,” Dr. Emery remarks. “We can act. If we do act, we increase the chances each child will lead a normal life.”

A Cutting-Edge Procedure

With one look at Ms. Shoup’s twins under the ultrasound, Dr. Emery knew medical measures needed to be taken

immediately. “We looked at the ultrasound, and one of my babies was basically plastic wrapped because the amniotic sac was so tight,” Ms. Shoup recalls. Under Dr. Emery’s skillful guidance, she was admitted to surgery. “I was absolutely petrified,” Ms. Shoup says. “Before the surgery, they showed me my babies on the ultrasound again, and I wasn’t sure if that was the last time I’d ever get to see them.” Scared as she was, Dr. Emery did everything he could to keep her calm, talking her through the procedure and even cracking jokes when he could. After making a small incision into her abdomen, Dr. Emery sent a small scope inside Ms. Shoup’s uterus. Using the scope and a monitor, Dr. Emery mapped out the blood vessels along the placenta. Then, once he ascertained the connections between the two fetuses, he used a laser to systematically cauterize the connecting vessels in a process called sequential selective photocoagulation. By starting with the vessels from the donor fetus to the recipient fetus, he allowed for blood to begin rushing back into the donor. Once those vessels were cauterized, he worked on the vessels traveling from the recipient to the donor. Within an hour, the procedure was complete—and successful.

“...one of my babies was basically plastic wrapped. I was absolutely petrified,” Ms. Shoup says. “Before the surgery, they showed me my babies on the ultrasound again, and I wasn’t sure if that was the last time I’d ever get to see them.”

A Happy Pregnancy

During Ms. Shoup’s ultrasound the next day, they could already see improvements. “Before connexions

my surgery, there was no hint of a bladder in the smaller baby,” Ms. Shoup remembers. “[However], by the next day, you could see it bulging ever so slightly.” This was exactly what Dr. Emery wanted to see; an increase in bladder size meant the fetus was getting more blood and creating more amniotic fluid. Furthering the good news: There were zero complications from the procedure, so Ms. Shoup was allowed to go home the very next day to rest and recover.

Like The 25 Club, you too can advance MWRI's efforts in treatment by donating. Visit

our website at mageewomens. org/giving/ and click the Donate Now button to give.

Ms. Shoup continued visiting Magee a couple times a week to monitor the pregnancy’s progress. At all times, Dr. Emery and the rest of the medical staff were constantly available for questions and often sat with Ms. Shoup to answer questions. Magee doctors soon scheduled an induction for 36 weeks, but her daughters had other plans. Ms. Shoup’s water broke in week 35, and Kennedy and Brooklyn were born completely healthy at 4 lbs., 2 oz. and 5 lbs., 6 oz., respectively. Three years later, Ms. Shoup’s twins are happy, sassy, and energetic toddlers in the Shoup household, and it’s all thanks to Dr. Emery, the dedicated researchers and caregivers at MWRI, and the donors backing them. In fact, it was a generous donation from The 25 Club that enabled the hospital to afford the endoscopic laser ablation equipment necessary to treat Ms. Shoup’s TTTS. 16

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(left to right) diagram of TTTS in the womb; Shoup twins, Kennedy and Brooklyn; Dr. Stephen Emery

Adriana, 6

Spina Bifida Survivor

Douglas, 4

Prune Belly Survivor

Cambree & Carly, 8 TTTS Survivors connexions

photo courtesy of bailey smith photography

after the storm

welcoming a rainbow baby by talitha a. mcguinness

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Much like the beauty of a rainbow after a storm, many moms refer to babies born after a loss as their rainbow babies.

Ashley found out she was pregnant with her rainbow baby in May 2017. She had to have a planned pregnancy due to a previous loss. In a previous pregnancy, she lost a baby girl at 5 months into the pregnancy. "I had the genetic testing done at 16 weeks and it came back elevated for spina bifida," said Ashley. "I was told that this test has a high false positive and everything should be fine." After waiting two weeks to find out the results, at the anatomy scan, the doctor confirmed the baby had spina bifida and that she wasnâ&#x20AC;&#x2122;t alive. Ashley chose to be induced at that time so that she could hold her baby girl, instead of having the surgical procedure to deliver.

She and her husband were so

baby. She went to counseling and eventually saw her sweet Melanie as a gift to her future siblings. Ashley and her husband miss her so very much, but knew that they wanted to have more children eventually. Fast forward to 14 years later. When planning to get pregnant this time, Ashley started taking a suggested prescription strength folic acid to prevent spina bifida from happening again. She started trying in April and found out she was pregnant on Memorial Day weekend, 2017. "I had great care and early testing to check for genetic abnormalities. We got confirmation that this baby

Ashley said, "labor was long and hard. I was in labor for 3 days and once I delivered her, I held her, had her baptized, and had a funeral for her. Her name was Melanie Taylor." Like so many moms around the world, Ashley soon learned the reality of how difficult it is to leave the hospital without your

from top to bottom: ashley with mason; mason during his newbown photos

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photos courtesy of firewife photography

The rainbow certainly doesnâ&#x20AC;&#x2122;t erase the aftermath of the storm, nor does the arrival of a new baby eclipse the tragedy of any loss during or after pregnancy and delivery.

was extremely healthy and that there was no evidence of spina bifida. I was in tears!" said Ashley.

A rainbow baby brings so much joy... but they don't tell you about the ambivalence you find hiding in trying to celebrate this new chance at being a parent. excited and relieved to know that their baby was healthy. It was finally time they could allow themselves to get excited for this pregnancy and baby. "Don’t get me wrong, I was so excited before. However, to have that confirmation that everything was good with this baby was such a relief," she said. Although the health was the most important, they found out they were having a boy. They wanted to honor Melanie with his name, but they would also be honoring a grandmother (Ruth) in the name. Being of the Jewish faith, you take the initial or name of someone who has passed to make a new name for the baby. The couple decided on Mason Ryan. Even with the great outcome and knowing that the baby was so healthy, Ashley said she still had anxiety throughout the pregnancy. Fear of the unknown and what was to come once he was here were constant until she felt him kick for the first time, an experience that she never got to have with Melanie. "I would sit and just stare at my belly and watch his little kicks and flips! It was such an awesome experience," she said.

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When all was said and done, Ashley ended up having some blood pressure issues and was diagnosed with gestational hypertension. She was induced at 37 weeks, with Mason Ryan being born on January 2, 2018 at 7 lbs 1 oz , 21 inches. He was a healthy baby boy and his homecoming was long-awaited. Even though the pregnancy was full of anxiety and worry, Ashley says it was all worth it to have her precious rainbow baby with her. "In her passing, she was able to give life to her future siblings. Losing a baby is the hardest thing I ever had to go though, one that I hope I never have to experience again. However, there is a light at the end of the tunnel when you get to hold your rainbow baby. While you will never forget that pregnancy or baby, they give you the best gift in the birth of their sibling," said Ashley.

a shared experience... Josh and Jessi Van Eseltine dated four years before getting married. They wanted to do things in order --- you know, dating, getting married, then kids. After eight short months of marriage Jessie got a “feeling” and they shared the news with close family and friends. She experienced around

the clock morning sickness, but the pregnancy kept moving along.

20 weeks, feeling better than ever

Jessi was on cloud nine as she reached the halfway mark of the pregnancy. The morning sickness had finally subsided and her hormones seemed to level out. During this week she noticed swelling in her ankles and a check-up revealed higher than normal blood pressure. "The doctor seemed to think that everything would be okay with cutting sodium and logging my blood pressure three times a day," said Jessi. A few weeks later, with blood pressure still high, it was suggested that Jessi may be experiencing preeclampsia. She was admitted to the hospital for a 24-hour test to determine the prognosis, knowing that her little girl could be delivered within a matter of days. "As a couple more days passed, we wanted to prepare ourselves for Grace’s delivery and the life ahead of us," said Jessi. "We knew she was going to be a preemie and we knew she would live in the NICU for about 3 months."

time for celebration On a Saturday at the hospital, the couple had lots of visitors bringing flowers, cards, and even stuff to help decorate Jessi's room. This day was a day of celebration. The doctors had told them if they made it to Saturday, that Grace would have a 75% chance of survival. On Sunday, the good news

continued. Josh and Jessi celebrated their one year anniversary and Jessi's dad delivered their wedding cake topper to enjoy. Nurses and doctors continued to check Grace’s heartbeat every four hours and Sunday night everything was great.

our worst nightmare

Monday morning around 6 am, the nurse came in for a check-up. She hooked Jessi up to the fetal monitor and began to search for the heartbeat. She was having a hard time finding it, but everything was perfect with the baby the day before, so Jessi was not worried. The nurse excused herself from the room and brought back two other nurses with her. The nurses kept repeating “I can’t find it.” The next nurse would try with no luck either, so they called for the doctor. Shortly after the doctor walked in with an ultrasound machine, he began to check and right away discovered that there was no heartbeat for Grace. Jessi was not living a nightmare because it was really happening.

"I couldn’t comprehend the words coming out of his month when he said 'there is no longer a heartbeat'," said Jessi. "I even asked him 'what does that mean?' He then said 'I’m very sorry, but the baby has passed.' Those words are words that will never leave my head." A few days later, Grace Elise Van Eseltine was born. She weighed 1lb. 4oz. Jessi and Josh spent some time with her and said their goodbyes. A few days after leaving the hospital, the family had a small intimate funeral and pink carnations covered her tiny casket as they laid her to rest.

living without grace

The following weeks and months were the hardest for the couple, as learning to live life without Grace seemed unbearable. Josh and Jessi had a supportive group of family and friends that helped remind them of their faith in God during this time. Friends gave them books,

prayed for and with them, and helped in many ways. Jessi said, "Grieving the loss of our daughter is something I never in my life imagined I would have to do. I was heartbroken, sad, angry, and devastated. I was even angry at God. How could He have allowed this is happen?" When they decided to try again, they met with doctors to get many opinions. Josh and Jessi knew that the next pregnancy would be nervewrecking and on edge, but they put their faith in God and prayed every day. Three years later, Josh and Jessi were blessed with a beautiful baby boy who they adore and thank God for. They named him Grayson after Grace. "We love the similarity in the two names. Grayson is our rainbow baby who has become the light of our lives," said Jessi.

from left to right: jessi and josh with grace after she passed (photo by now i lay me down to sleep photographer, julie staley); the couple with grayson, now 2 years old (photo by bailey smith photography)

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choosing the right OB:

when being picky is okay! I found out I was having twins at my first OB appointment. It was my first time being pregnant and my grandmother (who had severe dementia) kept saying things like “you know, twins run in the family.” My mother and I paid her no mind because, well most of the time, she was not lucid. During the ultrasound scan, the OB looked at us and said, “You are never going to believe this.” My grandmother said with an I told you so tone “its twins.” When the doctor asked “how did you know?”, my heart started racing. Being my first pregnancy, there were a lot of things for which I was not prepared. There were questions I didn’t know to ask about things I had never known I needed to know, and things I didn’t know I could do throughout the pregnancy and at delivery. After delivering baby number four and having experienced a twin birth, a water birth, and a C-section, I think I have a much better grasp on the topic and can impart some of this wisdom to others for future prenatal interviews. The first thing I think every mother-to-be by kinan copen

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by nicole esquibel

should know is that you can change doctors when you become pregnant. The obstetrician/gynecologist you’ve seen for years should, but may no longer suit you for the purpose of pregnancy, labor and delivery. If I had known this, I would have changed when pregnant with my twins. The OB I had at that time started talking about a C-section very early in the pregnancy, which I knew I wanted to avoid if at all possible. I wanted this to be as natural an experience as possible. With my second pregnancy (a singleton), I did change doctors. The first one I saw told me I had to stop breastfeeding my twins, who were 3 months old at the time. I knew that there was no medical need for this recommendation beyond a concern for my physical well-being, as I had already discussed it with my lactation consultant and had plans to continue. This same OB told me they would not do an ultrasound to see if I was having twins again until around 20 weeks. Being familiar with the shock of twins the first time around, I wanted to find out as soon as I could so that I was able to prepare. This particular doctor also didn’t do the Doppler to check the heart rate until my third appointment, at which time I told them I was not coming back. While my experiences are certainly

unique to me, there can be many reasons why your longtime OB may no longer be a good fit for your pregnancy. Do you feel they have good bedside manner and you'll feel comfortable come delivery time? While OBs deliver babies every day, some deliveries present unique challenges and you want to be sure you have a doctor who is calm in the midst of chaos who can deliver your baby or babies without a lot of unnecessary commotion. Just use your best judgment and your growing instincts on whether to stay or to start doing your research to move on. The second thing I would tell mommies-to-be is to shop around when it comes to the type of provider you would like to see and the birth plan you hope to have at delivery. As opposed to the traditional OB visits and hospitals where many of our own mothers delivered, there are so many more options open to moms these days. Some things that I think are good to research and consider in your birth plan include doulas, midwives, water and natural births, c-sections, and even where you will deliver (at home, a birthing center, or the hospital).

With my third pregnancy, I knew exactly how I wanted everything to go and was convinced of how it would all play out. I knew I wanted a midwife not an OB. I wanted everything to be as natural as possible. I wanted to stay home until delivery so that I could be more comfortable and relaxed when the harder labor occurred. I went into active labor 3 times over the course of a week and stalled out every time when contractions got to be about 4 minutes apart. After giving up and going to the hospital, they realized I was 7 centimeters dilated, but the baby was transverse. They attempted to turn him, but being in active labor, he was not cooperating. They prepared me for a C-section and at one point during the chaos, there were 5 different people talking at once and I couldnâ&#x20AC;&#x2122;t understand what any of them wanted. They gave me morphine in a spinal tap so I couldnâ&#x20AC;&#x2122;t feel from about my armpits down. I had nightmares for days afterwards about it being zombies fishing inside of me instead of doctors! I had to be helped to the bathroom and the pain was unreal. In the end, I had a healthy baby, but I felt like I had failed. The biggest take away from these experiences is to know that your OB or provider should be one of your biggest fans in helping you have a successful and healthy delivery. There are many options now and the traditional delivery option is not for everyone. Most of us know that not even every pregnancy is the same. Being informed of your options from beginning to end is extremely important when choosing the right OB, because after all, it is your choice!

to consider a few more things

Other things of importance that you should ask during a prenatal interview include (but are certainly not limited to) the following: * High Risk Experience - do they have experience and are they comfortable taking you on as a potential high risk pregnancy? Not all high risk situations are twin related, as fetal syndromes can present themselves at any point and to any expectant mother * Insurance - do they accept your insurance? This is a no-brainer, because deliveries are expensive, whether you're delivering just one or more! * Birthing Options - what is your birth plan and are they open to it? Will they allow you to move around, use a birthing ball, play music, etc.? * Delivery Room Attendance - are they open to your family being there to welcome your baby or babies? * Breastfeeding & Circumcision - are they willing to support your decisions, one way or the other? Both of these subjects include emotional attachments, so having discussions earlier on lessen the fuse on delivery day. * Banking Cord Blood - do they understand the benefits and will they support your decision to have this procedure take place immediately following delivery? * Encapsulation of Placenta - do they know the benefits and will they help and be supportive of this process after delivery?

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special feature

milestones & memories: a minnesota mom reflects on the inutero surgery that saved her twins’ lives special editorial submitted by our partners at Midwest Fetal Care Center 24 connexions

Twins Amina and Rania Dualle just celebrated their fourth birthday. The milestone brings their mom great joy—and deep gratitude for the medical care that saved the girls’ lives before they were even born. In 2013, Siman Nuurali returned to Minnesota after spending the summer in Kenya with her family. She wasn’t feeling like herself, worried that she’d picked up malaria on her trip. A visit to the doctor brought her good news: it wasn’t malaria. She was 7 weeks’ pregnant --- with twins. Siman was thrilled. But at a routine appointment around 20 weeks, the ultrasound tech noticed something abnormal. Doctors told Siman that the twins had twin-totwin transfusion syndrome (TTTS), a rare condition that happens in about 10- to 15-percent of identical twins. One twin is “donating” blood to the other while in the womb, so one baby has too much and the other not enough. It is known to be life-threatening for both. Siman was quickly introduced to the multi-disciplinary team at Midwest Fetal Care Center, a collaboration between Children’s Minnesota and Allina Health. The

maternal fetal medicine physician explained the condition in more detail and walked Siman through the need for in-utero fetoscopic laser ablation surgery. The procedure, which only a few centers in the United States have the expertise and technology to perform, blocks the transfer of blood between babies, giving them both a fighting chance at survival. Fortunately, Siman experienced a successful surgery the very next day. After the surgery, the goal was to keep the pregnancy going as long as possible before delivering. Siman had weekly doctor appointments for an ultrasound, iron infusions and to drain built-up fluid, which improved both her and the babies’ overall health. She continued to feel sick throughout the pregnancy, but she knew the longer she was pregnant, the better it was for her daughters. At 24 weeks, contractions started. Siman checked into The Mother Baby Center at Abbott Northwestern Hospital and Children’s Minnesota and, four days later, doctors told her she needed to deliver the babies. The twins were born that night: Rania first, and Amina a minute later. Each baby had a nurse waiting to take them to the high-risk room next to Siman’s operating room, where they were quickly stabilized and intubated, which helped with their breathing. From there, they were taken

to the Children’s Minnesota neonatal intensive care unit (NICU). Incredibly, the twins didn’t require any surgeries after birth. However, they did spend several months in Children’s Minnesota NICU and infant care center (ICC). They were both closely monitored to make sure they were growing stronger and healthier, and receiving support for respiratory and other functions. Memories of those days in the NICU are hazy for Siman. The lines between day and night blurred, as they do for most parents of newborns, but this was different.

“I'd be wide awake

at 3:00 a.m. and sleeping at 5:00 p.m. I marked minutes and hours by how often the machines beeped,” she explains. “The only concept of time that mattered was getting through a 24-hour period and miraculously seeing they were still alive; [they were another] day older.”

What Siman does remember clearly, though, is the care their family received. Her medical team included perinatologists, a fetal surgeon, a neonatologist and NICU staff for both babies, anesthesiologists, a great many specialized nurses, and even an ethicist who helps surgeons evaluate risks that may arise from complications during labor and delivery. Siman was surprised—and touched—by the kindness of each person they encountered. “My idea of surgeons was that they would be brash, egotistical and hurried. I could not have been more wrong,” she admits. “These were doctors working at the top of their field, as cutting edge as you could get in surgery and medicine. Here they all were with their entire support team to care for me and my unborn babies.” Siman fondly remembers the perinatal care coordinator, who “had a way of making me believe, every time I talked to her, that we’d be alright.” She’s thankful for the neonatologists, too, especially the one whose personal goal was to “get those babies fat,” she says. “He said he had never in his entire career failed to fatten a baby out of the NICU and he really did come through [on that one].” In May 2014,the family got good news. Amina, the stronger of the two—the one who had been receiving blood in utero— was healthy enough to go home. However, with Rania still requiring care in the hospital, connexions

More About... Midwest Fetal Care Center

Siman with four year olds, Amina and Rania Siman desperately wanted to be close to both of her babies. In order to make things as easy as possible for the family, the NICU staff placed a second crib in the room so they could all stay together. “I can’t even put into words how much that meant to me, to be able to stay with both of my girls and keep them together,” she says. “I was never away from them.” One month later, both girls went home. Today, the four-yearolds are remarkably healthy despite their rocky beginnings. While they do require the use of medication daily for their lungs and require regular checkups, they “run and play and tumble as easily as the next kid,” says their mom. Any doctor or parent who has 26

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experienced it can tell you that high-risk pregnancies are never easy. Spending months in the hospital can be overwhelming and can take a toll on your physical and emotional well-being, but fortunately, Siman remembers the positive. “It seems so long ago because the girls are doing so well, but every now and then I'll see a little scar from an IV line or where a tube made an indent in the skin. Then I remember.” She gets constant reminders at work, too. As a service coordinator at Children’s Minnesota in Minneapolis, Siman often passes her doctor in the hallway. “He’s proof that there are extraordinary beings among us.”

Midwest Fetal Care Center, a collaboration between Children’s Minnesota and Allina Health, is the first and largest center of its kind in the Upper Midwest. The regional leader in treating complex conditions that affect high-risk moms and their unborn babies, the center is home to top-tier surgeons with highly specialized training and state-ofthe-art technology. Physicians and experts collaborate on patient cases to drive exceptional outcomes and the best possible support for every family. ************************ To learn more, visit midwestfetalcarecenter. org.

Avery & Bryson, 20 mos. SIUGR Survivors

Grace, 10 mos. TTTS Survivor

Zachary, 12 TTTS Survivor connexions

Aiden & Elijah, 5 mos.

photo courtesy of kristie serra photography

TTTS Survivors

Adelaide & Genevieve, 10 TTTS Survivors 28

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MIDWEST FETAL CARE CENTER 855-MWFETAL | 855-693-3825 MWFetalCare@allina.com midwestfetalcarecenter.org

a shoulder to cry on

a journey through grief and mourning

by kim bow

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"Grief and mourning are experiences we wish we didn’t have to live through in our lifetime, and yet we need to embrace them if we are to find hope after a loss." Grief and mourning. Two powerful words with two very different meanings, but often used interchangeably. Both are a part of the journey of loss and both are a necessary part of that seemingly never-ending journey. More often than not, we hear about how grief should move in a linear, orderly, stage-bystage fashion, where we move from one step to another until we reach the end. However, that is not the nature of grief, as there is never truly an end. Grief can overwhelm in one moment and then disappear for a time and come in waves at others. Grief can take on the role of jumping from emotion to emotion and it can even pose as multiple emotions at once. Grief can bring us from sadness to anger to confusion and back to sadness again. It can be messy and it can be beautiful. So then, what exactly is grief and how does it differ from mourning? Why are both a normal and necessary part of our journey? Together we will find out.

Grief

The first steps of our journey will begin with understanding grief. Grief is our own unique

internal and personal experience related to a loss. It is anything that you think and feel inside about the death. This may include any thoughts, emotions, physical symptoms, and even unexpected behaviors you are experiencing. Often times grief is linked solely to sadness when in actuality, grief is a combination of potential responses and feelings. The mixture and intensity of each different emotion or response may shift from second to second, minute to minute, hour to hour, or even day to day.

The Mind's Role

When in grief, the mind attempts to understand and rationalize the death, perhaps by thinking about the precious few memories or even the lack of memories, the events surrounding the death, any practical concerns, or even the possibilities of what could have been. The mind may even be having trouble concentrating. All of these thoughts and processes are a natural part of grief.

The Body's Role

Because the mind and body are connected, the body likewise responds to grief. Temporary experiences of things like: trouble sleeping, lower energy levels, muscle aches and pain,

tightness in your throat or chest, headaches, digestion troubles, fatigue, agitation, some tension, and perhaps even heart palpitations, are all examples of common physical symptoms.

Behavioral Influences

Even behavior may be altered by grief. Various expressions of emotion and behaviors such as crying, pacing, yelling, or isolation might be happening. Additionally, interactions with others might be altered. As long as you are not hurting yourself or anyone else, these behaviors are part of the necessary process of grief.

Emotions

The emotions of grief come in many colors and shades. • Shock, Numbness, Disbelief: The sensations of not believing that this is happening serve to help create insulation from reality for a time. • Disorganization, Confusion, Searching: You may sense the feelings of restlessness, impatience, agitation or even inadequacy or neglecting basic survival needs. • Anxiety, Panic, Fear: Questions may come up about the future and if “my” life will have meaning again along with possible thoughts of one’s own feelings of security. • Explosive Emotions: Hate, anger, resentment, or terror are the ones that may be distressing to others, and carry with

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them feelings of helplessness and hurt buried underneath. • Guilt and Regret: The “If only I would have…” question arises. • Loss, Emptiness, Sadness: Often some of the most difficult feelings that we face on our journey include these three. • Relief, Release: The sense of relief or release can be difficult to acknowledge. It may be experienced as a feeling that the loved one is no longer suffering or is free of pain. Many of the emotions of grief discussed above are colored in a negative light, as if they are bad emotions to experience. These judgements perpetuate some cultural attitudes that these emotions need to be denied or “overcome.” However, emotions such as depression, anxiety, confusion. fear, etc. are actually care-eliciting emotions or expressions that let others know that we need compassion and support, and that you may have “special needs” as a result of your loss. Grief is not something that we “get over” or resolve. Rather, it is something that is integrated into our lives. Many hold on to the Resolution Wish --- a wish that we would like grief to resolve, be linear, and finite. We would like to wake up one day and have all the painful thoughts and feelings vanish. The reality is that we reconcile grief because it is a

transformative and life-changing experience.

"To integrate loss, though, requires us to befriend it in ways that allow us to be transformed by our suffering." Mourning

Armed with a much better understanding of grief, we can look at mourning. Mourning is the expression of one’s grief outside of the self. In essence, mourning is grief gone public, or grief moving from the inside outwards. It is showing and/or doing what one feels. Tears are a sign of mourning. Talking with a trusted friend or family member about the death is another sign. You can write in a journal or create a scrap book. Writing a thank you note for a gift of food, choreographing a dance, or even completing a 5k in memory of the one lost are all expressions of mourning. The list continues infinitely based on each person’s chosen form of expression. After a death, it's important to both grieve and mourn. The emotions of grief need to be shared and expressed. Mourning

is part of the journey of healing, finding hope again, and reconciliation. This comes about when one actively engages in the hard work of mourning by giving some gentle attention to the Six Needs of Mourning. There exist a few different models surrounding the needs of mourning, but the model put forth by Dr. Alan Wolfelt will be our lens. Those six needs are as follows: • Acknowledging the reality of the death • Embracing the pain of the loss • Remembering the person who died • Developing a new selfidentity • Searching for meaning • Receiving ongoing support from others

By working and engaging with the Six Needs of Mourning, one may find a sense of renewed energy, the capacity to enjoy life experiences, and an understanding that you don’t “get over” grief. The work that goes into this part of the journey doesn’t mean that it is constantly engaged. Rather, we evade the new reality at times, while we willfully encounter it at others. We ebb and flow between them before we reconcile to the new reality of life without the one we have lost. We need to do the hard work of experiencing grief and engaging in mourning to find hope. Hope springs eternal, and it is there, found by moving through the entire process.

Kimberlee Bow is a Licensed Professional Counselor and Dance/Movement Therapist, and holds a Certification in Thanatology. She worked as the director of a counseling center, and has volunteered her services with multiple populations, including veterans, at-risk youth, elders, and families experiencing loss. She continues to write, present, and provide trainings to support her local community.

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Leyton & Parker, 6

Lillian, 6

TTTS Survivors

Spina Bifida Survivor

Makenna & Bailey, 9 wks

Roman, 20 mos

TTTS Survivors

Spina Bifida Survivor connexions

top tips for creating the perfect eco-friendly nursery for your babies Congratulations! Your babies are on the way and before the big day is here, you’ll most likely be planning their nursery. Whether this is a moment you’ve always dreamed of or if you’re winging it and just getting the basics together, this is both a fun and exciting time. As you begin the process, keep in mind there’s more to decorating your babies’ first bedroom than cute blankets and wall art. In the first couple of years, you’re going to be spending a lot of time in this room, so you’re going to want to plan for it. Here’s your go-to guide with a few tips on what you’ll need when putting together your babies’ nursery:

· Go Green with Bedding & Flooring — There

are a few items in the nursery that are best purchased in organic cotton and eco-friendly fabrics and materials. Think mattresses, beddings, rugs, and paint. If flooring is optional, choose bamboo or hardwood over carpeting, which contains allergens and chemicals. Carpeting is harder to clean and keep out dust and dirt. Choosing organic, eco-friendly products are free of toxic compounds and chemicals, and much better for baby.

· The Perfect Palette — Babies respond better to soothing paint and nursery colors in a soft

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exclusive by... palette like greens, aqua blues and pale pinks. Paler colors are calming and help induce sleep. Bright, bold colors and patterns can be fun, but are stimulating, something to keep in mind when the purpose of a room is to sleep. When selecting paint, choose one free of VOC’s (Volatile Organic Compounds containing carbon chemicals).

· It’s Play Time — Designate a specific area to the

room for reading, listening to music, snuggling and bonding in the nursery. If you make an area for this, your babies will soon learn that pleasant things happen here. This area could include a rocking chair, small child’s chair, a basket of toys, a bookshelf (anchored to the wall), or basket for books and a plush rug for the floor. Anywhere that you and baby can spend time awake together is perfect. Opt for an organic, hypo-allergenic rug like Lorena Canals since babies will be spending much tummy and play time on the floor.

· The Ideal Feeding Area — There’s nothing like a

nice glider or overstuffed chair with an ottoman for feeding your babies. Daytime, and especially night time, feedings will be much more comfortable and relaxing in a great chair. Add a cozy pillow for your lower back and a nursing pillow to support your arm that holds babies. Whether you’re nursing or bottle feeding your little ones, support and comfort

for you is key. If you’re relaxed, they will be, too! Keep a basket nearby for items like burp cloths, baby wipes, books or magazines, extra pacifiers, and any other items you may require while feeding.

· Time for a Change — Before

eco-friendly and exceptionallymade, washable rugs and cushions in adorable shapes, designs and colors. They are also all natural, hypo-allergenic and functional. Visit http://lorenacanals.us and follow them on Instagram, Facebook, Twitter, Pinterest and YouTube.

you know it, you’ll be a quick (diaper) change artist like most parents. This can be a changing table or a dresser with a changing mat. Before purchasing a changing table, consider your needs beyond diaper changes and think about how you can use this piece of furniture when your babies are out of diapers. Keep essentials like diapers, wipes and diaper cream close by so that the important things are always within arm’s reach. Invest in a high quality diaper pail to place right next to the changing table to keep baby’s room smelling fresh.

· The Importance of Air & Light

— A few weeks before babies are expected to arrive, open the windows and air out the room, especially important if you’ve been painting and wallpapering. Lighting may not top your list of nursery needs, but it is no less important. It’s a great idea to have a night light or small lamp in the room to check on baby during the night and for middle of the night diaper changes and feedings. It’s also nice to have a lamp near the feeding and play area. Choose soft, less harsh lighting that’s soothing to baby. Make sure to place the crib away from the window, as bright sunlight or street lamps may hamper baby’s ability to sleep.

Lorena Canals’ Spanish lifestyle brand is making its eco-mark in the U.S. with gorgeously designed,

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special feature

bioengineering alternative to open fetal repair spina bifida

In the developing fetus, the brain and spinal cord form from a neural tube. Failure of this tube to completely close causes neural tube defects, such as spina bifida. Up to 10 percent of infants born with an open neural tube defect die because of complications including brainstem dysfunction, shunt malfunctions and infections. Babies born with open spina bifida can have significant complications including bowel and urinary incontinence, leg weakness or paralysis and sexual and psychological dysfunction. In utero spina bifida repair of open neural tube defects is possible, but occurs relatively late (22-24 weeks of gestation), and preservation of neurological 36 connexions

function is minimal. At the time of the repair, the neural tissue has already been damaged by mechanical trauma, chemical irritation and inflammation associated with exposure to amniotic fluid. Ahmed Marwan, MD, surgeon and researcher at the Colorado Fetal Care Center, and Daewon Park, Ph.D., an inventor and an assistant professor in the Department of Bioengineering at the University of Colorado Denver Anschutz Medical Campus, are developing an alternative approach. They've created a minimallyinvasive repair method using a bioengineered material â&#x20AC;&#x201C; a reverse thermal gel â&#x20AC;&#x201C; to cover the open neural tube defect at an earlier gestational age.

Reverse thermal gels are biomaterials that change state, from a liquid to a gel (a jellolike substance), with a change in temperature. They are liquid at room temperature and spontaneously assemble into a solid scaffold at human body temperature. Cells or therapeutics can be mixed into a liquid reverse thermal gel, which can then serve as a scaffold for controlled release of therapeutic agents.

Research methods

The researchers chemically synthesized a novel reverse thermal gel, called PSHUPNIPAAm, and characterized its ultrastructure by scanning electron microscopy, its stability in amniotic fluids and its permeability.

1,500

Babies Born with Spina Bifida Each Year

10%

Postnatal Death Rate for Infants Born with Neural Tube Defects

22-24

Weeks' Gestation Current Time Frame for in Utero Repair of NTDs

They studied the effects of PSHU-PNIPAAm on basic cellular functions of mouse neonatal fibroblasts, keratinocytes and neurons, and they injected the material into mouse embryos in utero.

Research results and discussion

Physical characteristics of PSHU-PNIPAAm: * Honeycomb or branching structure with variable pore size depending on polymer concentration * PSHU backbone does not degrade after up to 30 days of exposure to human or sheep amniotic fluid * Minimal limited and predictable permeability * Forms a stable gel at temperatures that reflect the intrauterine environment * Polymer gel is stable in an amniotic fluid environment for two months PSHU-PNIPAAm is biocompatible with mouse neonatal fibroblasts, keratinocytes and neurons and it supports normal growth of these cells. It is not cytotoxic to these cell types. PSHU-PNIPAAm supports cellular migration of mouse embryonic fibroblasts, a proxy measure for wound healing capacity. Direct microinjection of PSHU-PNIPAAm into an ex utero mouse spina bifida

model embryo was technically successful and did not affect the viability of the embryo, which continued to develop in culture. Ultrasound-guided injections in utero into the amniotic sac of embryonic mice were successful and compatible with fetal survival and maintenance of pregnancy in 50 percent of cases. The reverse thermal gel successfully formed a gel and attached to the skin, demonstrating successful in utero suitability as a potential alternative for open neural tube defect closure.

Research conclusions

In ongoing studies, the investigators will explore the ability of PSHU-PNIPAAm to act as a scaffold for cellular interaction. They will also make additional chemical modifications to incorporate biomolecules that mimic the extracellular matrix environment of the fetus and enhance cellular activities. The potential to use the material in a minimally-invasive approach (direct injection with a fine gauge needle) at earlier gestational ages offers a promising alternative to current in utero repairs for spina bifida. ******************************** The paper was published in the 2017 Macromolecular Bioscience journal and funding was provided by the Fetal Health Foundation.

About Children’s Hospital Colorado Since 1908 we’ve been caring for kids at all ages and stages of life. We see more, treat more and heal more children than any hospital in our seven-state region. And since we’re pioneering treatments that are shaping the future of pediatrics, we’re providing the best possible care years before it becomes available at other hospitals. connexions

No one has to tell you that surgery is scary. It's a universal truth that most people would rather avoid it at all costs. Surgery being performed on your unborn child adds a whole new level of anxiety, fright, and uncertainty. Almost 15 years ago, my wife and I went through fetal surgery to save our unborn twin daughters. We know all too well how this time feels like an eternity, yet everything around you is moving at lightning-fast pace. We put a list together below of things you should know before your surgery to help you feel more at ease and know what to expect should the need for surgery arise.

1. Have faith that you have come to this decision as the best option for your baby (or babies). Since first hearing

there was a problem, you have learned as much as possible, you have asked the hard questions, and you know all there is to know about the fetal syndrome diagnosis your baby (or babies) might be facing. Personally, we took solace in knowing that something rather than nothing was going to be tried, as our prognosis outside of any intervention was extremely grim.

top things to know before your surgery by lonnie somers

2. Be sure you understand how the surgery will be performed. Your doctor

and/or patient coordinator will take you through all that will take place during your surgery. Donâ&#x20AC;&#x2122;t be afraid to ask questions or ask for clarification on anything you donâ&#x20AC;&#x2122;t understand. Here are a few questions to which you should know the answers (and this may not be inclusive): a. Will you be awake during the procedure? You may very likely be awake, but you may want to inquire about what will be done to ensure you are comfortable throughout the procedure. In the end, it will give you a little more peace of mind. b. During the surgery, if I am awake, who do I communicate with if I am not feeling well, or need something? This is important so that you feel safe and knowledgeable about each step along the way, but most importantly, who will be your safe haven should you need to communicate something. c. Who will be in the operating room? This is important to ask, because you donâ&#x20AC;&#x2122;t want

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to be surprised of all the people that may be in the room. There are often additional doctors shadowing or assisting the primary fetal surgeon, as well as a team of nurses who are there to assist the surgery team and some who will be focused primarily on you. Know who will be in there and what their role is. This will help comfort you. d. How long generally will the surgery be? This varies from surgery to surgery and from case to case. e. How will you keep my family updated? This is far more important for your loved ones waiting on your surgery to be complete, but you will recover much easier knowing who will communicate with them and when. f. If I am awake, will the surgeon be explaining to me everything they are doing? Some fetal surgeons do their best to keep the patient in the loop as the surgery is progressing, while others like to get right to business. Knowing which type of surgeon you have will help you go into it much more easily. There may be a host of other questions that you have, but each of these are a good start and are important for your peace of mind in helping you feel prepared before, during and even after your surgery.

3. Know that the doctors and nurses have compassion and care for you and your baby (or babies). Things

move very quickly in fetal surgery, but know that these doctors and nurses truly are concerned deeply for you and your baby (or babies). Prior to our surgery, our doctor walked in, put his hands on my wife’s belly to feel our baby girls kicking, and looked at us both and said, “I will do everything I can for them.” He may not even remember doing it, but this small gesture made us feel such comfort and we knew we were in great hands.

4. Know what to expect post-surgery.

Usually, you will be monitored for contractions or any other complications that could arise after the procedure. Ask about how you will be monitored, what they will be monitoring, and perhaps even for how long. Also be sure to understand any of the complications they will look for and if a complication should arise, what will take place to address it.

5. The first 24 to 48 hours are the most critical. Be sure you know

when your doctor will be checking on you the next day and what things they will be looking for in the baby’s (or

babies') health, as well as for your own well-being.

6. Be sure you know how long they intend to keep you in the hospital. Most fetal

procedures will require an overnight stay. If all looks well the next day, they may release you, but they may want you to stay in town for an extra day or two (assuming that you traveled to a center).

7. Finally, it is important to know once discharged what your restrictions will be. Since part of your

restrictions may include bedrest, be sure you are set with a circle of care that includes your high-risk specialist, your fetal specialist (who did the surgery), and possibly your main OB/ Gyn. For the rest of your pregnancy, you should be seen by your high-risk specialist along with your OB/Gyn. Both should communicate with each other frequently, and keep the main fetal surgeon in the loop to stay on top of your care. Fetal surgery is no doubt a scary time, but being prepared, asking questions, and ensuring you have much of the above taken care of will leave you to focus on what is most important --- the health and well-being of you and your baby (or babies).

Lonnie Somers is the co-founder of the Fetal Health Foundation, and spearheads Denver's Great Candy Run. He and his wife Michelle own Hal Sports, a Denver based event management company, where he serves various running, stairclimbing and other charitable events all over the country in timing, production, and even as announcer. He is an avid runner and recently completed a half marathon with his twin daughters.

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Ava & Isabella, 1 TTTS Survivors

Caelie, 12 TTTS Survivor 40

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Ella, 12

TTTS Survivor

an award winning family 5K!

So excited, we can hardly stand it! DENVER NOVEMBER 11th

MINNEAPOLIS OCTOBER 13th

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special feature

expert care from the cincinnati fetal center

When a fetal abnormality has been diagnosed, pregnancy can quickly turn from feelings of joy and excitement to fear and worry. At the Cincinnati Fetal Center, our team of experts is dedicated to exploring the unique challenges and opportunities facing each patient and unborn baby. As we do so, we often are able to provide innovative treatment options that offer real hope. Our team is led by physicians from Cincinnati Children’s, Good Samaritan Hospital and University of Cincinnati Medical Center, who specialize in treating complex and rare fetal conditions. As experts in maternal-fetal medicine, neonatology and fetal surgery, we share a passion for providing exceptional, comprehensive care. Our extensive experience, coupled with our clinical and basic science research to improve fetal care, enables us to provide the most sophisticated, effective therapies available.

Care for the Full Spectrum of Fetal Conditions

The Cincinnati Fetal Center is one of only a few comprehensive fetal care centers in the world. We use advanced technologies and cutting-edge therapies to treat a variety of medically complex fetal conditions, including: special editorial submitted by our partners at The Cincinnati Fetal Center 42 connexions

• Amniotic band syndrome • Bladder outlet obstruction (BOO)

• Chorioangiomas/ placental tumors • Congenital cardiac disorders* • Congenital pulmonary airway malformation/ Congenital cystic adenomatoid malformation (CPAM/ CCAM) • Congenital diaphragmatic hernia (CDH) • Fetal teratomas and other tumors • Myelomeningocele (MMC)/spina bifida • Twin-reversed arterial perfusion (TRAP) sequence • Twin-twin transfusion syndrome (TTTS) • Complex multiple gestations * in conjunction with the Fetal Heart Program at Cincinnati Children’s We offer sophisticated diagnostic testing and comprehensive treatment options. Our center’s distinctive three-hospital collaboration allows us to draw on extensive resources as we develop treatment plans tailored to each of our individual patients.

Sophisticated Surgery Offers Hope

Anisah Brown was nearly three months pregnant when a routine ultrasound uncovered a problem. Her unborn baby was diagnosed with a life-threatening case of congenital diaphragmatic hernia, or CDH. Dr. William Schnettler of Good Samaritan Hospital referred Anisah to the Cincinnati

Azare didn’t have as many neonatal complications as we typically see, and he was able to go home earlier than we expected, after just 10 weeks. Fetal Center for evaluation and learned that a procedure was available that might give her child a chance to live. CDH occurs when a hole develops in an unborn baby’s diaphragm (the breathing muscle that separates the chest from the abdomen). The opening allows the abdominal organs to push into the baby’s chest and crowd the developing lungs. This can cause the lungs to remain small and underdeveloped. Fetoscopic endoluminal tracheal occlusion, or FETO, is a surgical procedure performed in utero that can help the fetus’ lungs develop. The Cincinnati Fetal Center is part of a research study to investigate the feasibility and safety of this procedure. While the surgery has been performed

with success in Europe, Anisah was the first to undergo the procedure at the Cincinnati Fetal Center. She had the FETO procedure when she was 29 weeks pregnant. Five weeks later, after the balloon was removed, her son Azare was born. “It was the best moment of my life,” says Anisah. Her surgeons are pleased with the outcome. “The results were very encouraging,” says Jose L. Peiró, MD, PhD, Anisah’s fetal surgeon and the Cincinnati Fetal Center’s endoscopic fetal surgery director. “Azare didn’t have as many neonatal complications as we typically see, and he was able to go home earlier than we expected, after just 10 weeks.” Azare recently celebrated his first birthday, with no idea how many other babies the results of his surgery may help in the future. “The results of this procedure will help us as we continue to evaluate tracheal occlusions and how feasible they may be for other families,” says Foong-Yen Lim, MD, surgical director of the Cincinnati Fetal Center.

Our Team

The Cincinnati Fetal Center is a multidisciplinary program with a core team of faculty and staff who provide care that is both highly specialized and compassionate, with each of our patient’s needs at the forefront at all times. Our team is made up of: connexions

• Maternal fetal medicine physicians • Pediatric surgeons • Neonatologists • Clinical director • Advanced practice nurses • Nurse coordinators specializing in fetal care • Labor and delivery nurses • Dedicated social worker • Genetic counselors • Customer service representatives • Insurance specialist • Program manager • Business director

work with others at the center to provide: • • • • • • • •

Diagnostic testing Fetal assessment Prenatal counseling A comprehensive management plan Fetal interventions and fetal surgery, if necessary Support services Postnatal care Long-term follow up

We provide care in an atmosphere of compassion, knowing that our patients and families are often dealing with difficult decisions and fears about the future. Collaboration is at the heart of our approach. Patients, family members and referring physicians are all part of our team, and we encourage referring physicians to contribute their own insights to the patient’s care.

In addition, we partner with more than a dozen specialty divisions to provide individualized counseling and care management planning for prenatal and postnatal care. Among the resources the Cincinnati Fetal Center offers are Child Life, Pastoral Care, a Family Resource Center, and a Pediatric Palliative and Comfort Care Team for families who need this support.

Comprehensive Evaluation, Diagnosis and Treatment

When you are referred to our center as a patient, one of our nurse coordinators will speak with you by phone to gather your background information. Using this information, along with any referral notes and test results, the team will determine which of our specialists are best suited to care for your needs. These physicians will 44 connexions

Azare, a CDH survivor, recently celebrated his first birthday

Innovative Treatment Options

Our physicians are passionate about finding novel therapies to improve surgical outcomes and enhance quality of life for patients. Innovation is a hallmark of our approach to care. For example, the Cincinnati Fetal Center is one of only a few institutions in the United States to offer surgical interventions for triplet pregnancies affected by TTTS, and for patients with TTTS who present with an anterior placenta, hydrops and short cervix. We offer all fetal procedures, including: • Open MMC Repair • Fetoscopic MMC repair • Fetoscopic endoluminal tracheal occlusion for CDH (FETO) • Ex-utero intrapartum treatment procedures – EXIT-to-airway – EXIT-to-resection – EXIT-to-extracorporeal membrane oxygenation (ECMO) • Shunting o Vesicoamniotic fetal shunting o Thoracentesis and thoracoamniotic shunting • Selective fetoscopic laser procedure • Radiofrequency ablation • Open fetal surgery for rare and life-threatening conditions • Fetoscopic devascularization of chorioangiomas/placental tumors

• Amnioport/Serial amnioinfusions • Amniocentesis, PUBS, and amnioreduction • Comprehensive care for high-risk genitourinary conditions including, but not limited to BOO and bilateral renal agenesis Our team also offers nonsurgical therapeutic options. Among them are: • • • •

Intrauterine transfusion Steroid therapy Expectant management High-risk pregnancy management • Genetic and prenatal counseling • Management of short cervix Careful prenatal planning allows us to anticipate potential complications that may occur following delivery and establish a strategy for managing those problems. We work closely with specialists at Cincinnati Children’s, who have extensive experience in caring for critically ill newborns and providing longterm follow-up care to help them reach their full potential. The goals of the Cincinnati Fetal Center are to educate our patients and work collaboratively to offer the best possible outcomes for complicated fetal diagnoses. We are proud to offer our patients expertise and care from such a strong group of caregivers and support staff who are fully committed to those goals.

Cincinnati Fetal Center Leadership Foong-Yen Lim, MD Surgical Director Jose Peiro, MD, MBA Endoscopic Fetal Surgery Director William Polzin, MD Maternal-Fetal Medicine Co-Director Arthur Evans, MD Maternal-Fetal Medicine Co-Director Paul Kingma, MD, PhD Neonatal Director Kim Burton, MSN, MBA, RNC Clinical Director Mounira Habli, MD Maternal-Fetal Medicine Specialist Sammy Tabbah, MD Maternal-Fetal Medicine Specialist ****************************

Learn More 1-888-338-2559 info@fetalcarecenter.org www.fetalcarecenter.org For emergency/inpatient transfers and outpatient referrals, non-urgent referrals and consultations with fetal care specialists, call 1-888-FETAL59. connexions

keeping your pelvic floor healthy? by jessica reale

Did you know that in countries like France or Germany, women routinely work with a physical therapist to rehabilitate the pelvic floor after having babies? In fact, I have often had clients from these countries who live in America seek me out for treatment, surprised that their physicians had not recommended it to them postpartum. Unfortunately, America is a little behind the curve when it comes to pelvic floor health. Many women are given blanket recommendations of “do Kegel exercises” when they are

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pregnant, but advice tends to end after that. Postpartum women experiencing problems like bladder leakage or painful sexual intercourse are told, “Well, you’ve had a baby…of course things are different,” and are left alone in managing these problems without receiving the help that they need. As a pelvic floor physical therapist and board-certified specialist in Women’s Health, this is so disheartening, and my hope is to shed a little light on this and make women aware that they deserve more. What exactly is the pelvic floor? The pelvic floor muscles sit inside the pelvis like a bowl, running from the pubic bone in the front to the tailbone in the back, circling around the urethra, vagina, and anus. There are three layers of these muscles, and together, they do several important jobs for our body. You can remember these as the “4 s’s”. First, they play both a “supportive and stabilizing” role in that they work together with a system of muscles, ligaments and fascia to support the organs in the pelvis and stabilize the pelvis, hips, and low back. The pelvic floor coordinates with the respiratory diaphragm, abdominal muscles and low back muscles to help to modulate intra-abdominal pressure and create stability with movement. When this system is not working properly, women can experience problems like pelvic organ prolapse (this is what is happening when someone tells you that

therapist. The earlier you can receive the help you need, the better for you in the long-run! Step 2: If you are not having pelvic floor problems, start working on keeping your pelvic floor healthy! Keeping a healthy pelvic floor means much more than just squeezing the muscles. A healthy pelvic floor muscle group should be able to contract to the right intensity when it needs to, relax appropriately, and coordinate well with the other muscles around the pelvis. Here are a few exercises you can try to work the full function of the pelvic floor muscles: • Coordinating your pelvic floor with breathing o Inhale through your nose, focusing on expanding your ribcage, relaxing your abdominal muscles and relaxing your pelvic floor. o Exhale through your mouth, drawing in your pelvic floor muscles around 25-50% of your maximal contraction (contracting in around the vagina and anus, like you are holding back gas or urine). o Repeat this pattern of breathing with light pelvic floor contractions for 2-3 minutes, 2 times each day. o This teaches your pelvic floor to coordinate with the diaphragm and other muscles around the pelvis with the right

pattern. Note: If you have any difficulty relaxing your pelvic floor, take a resting breath between these contractions.

• Quick pelvic floor contractions o Quickly contract and relax the pelvic floor muscles 5-10 times in a row, making sure to relax completely between contractions. o Repeat this pattern 2 times each day. o This teaches your pelvic floor to quickly activate when it is required (like when holding back urine with a hard cough!)

• Functional pelvic floor activation o Pick 1-2 activities to start with during your day (i.e. standing up from a chair, lifting a child, etc.) o Prior to performing the movement, inhale in through your nose and relax your muscles. o As you exhale, lightly draw in your pelvic floor muscles 25-50% as you perform the task. o This teaches your pelvic floor to contract with the right timing to support your organs, spine and pelvis as you move. Other Tips for Pelvic Floor Health! If you experience any pain/ discomfort, or see any exacerbation in your problems while performing these

exercises, STOP and contact your health care provider. These exercises are definitely not a “one size fits all” recommendation. Experiencing symptoms while performing them could mean they are not appropriate for you at this time. If that occurs, you would likely benefit from a comprehensive evaluation by a pelvic floor physical therapist.

Try not to use other muscles while doing the exercise! Often times, people will clench their buttocks, inner thighs or abdominal muscles while performing pelvic floor exercises. Do your best to quiet those muscles down and isolate the pelvic floor muscles. Special hint: If you are doing these exercises correctly, you shouldn’t see any movement around your body. Remember, the pelvic floor muscles are inside!

If you just had a baby (or two, or three!), take it easy for a while! Very light contractions with relaxation of the pelvic floor can stimulate blood flow and help with healing, however, many women benefit from spending a few weeks simply working on diaphragmatic breathing and relaxation of the pelvic floor muscles (especially if you experienced a tear during your delivery or had a c-section). After a few weeks, you can begin gently retraining the pelvic floor, but remember to take adequate rest between your contractions, and contact a pelvic floor physical therapist if you notice any problems that persist more than a few months.

Jessica Reale, PT, DPT, WCS is a physical therapist and board-certified specialist in Women’s Health. She specializes in treating men, women and children with pelvic floor problems and currently treats patients at One on One Physical Therapy in Atlanta, GA.

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photo courtesy of nyboneandjoint.com

bowel problems both during pregnancy and postpartum. How do you keep a healthy pelvic floor during pregnancy, after having a baby, and beyond?

At some point, women became convinced that there were certain problems they just needed to live with. Leaking urine when you cough or sneeze? “That’s normal after having babies.” Having pain when you have sex? “All women have pain sometimes.” her “bladder dropped”), or they may experience pain in and around the pelvis and low back. Of course, the muscles are most well-known for their “sphincteric” role, meaning that they contract to hold back urine and stool, and relax to allow for bowel and bladder emptying. Problems in these muscles can lead to urine or stool leakage or difficulty emptying the bladder or bowels. Lastly, the muscles play a key “sexual” role. They stretch to allow for sexual intercourse and contract rhythmically for pleasure and orgasm. If these muscles become tender, tight or sensitive (like from a scar), women can experience sexual pain. Does it really matter that much to keep a healthy pelvic floor?

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Actually, it really does. Pelvic floor disorders are extremely common. Almost 50% of women experience urinary leakage at some point in their lifetimes and up to 30% experience pain with sexual intercourse. Pretty big numbers, right? And the crazy thing is, being pregnant itself is a risk factor for many future pelvic floor problems, so learning about these issues and striving to prevent them should be on the radar of any woman in her childbearing years (and arguably, before and after that too!) Research is pretty encouraging when it comes to retraining the pelvic floor. In fact, a recent Cochrane review recommended pelvic floor training for pregnant women to prevent urinary and

Step 1: Identify any current problems you have and seek help! At some point, women became convinced that there were certain problems they just needed to live with. Leaking urine when you cough or sneeze? “That’s normal after having babies.” Having pain when you have sex? “All women have pain sometimes.” And really, I could go on and on. The myths are pervasive, and the real truth is that there is much that can be done to help the problems women experience. So, what might lead you to think you have a pelvic floor problem? Here are some common signs and symptoms: • Urinary problems (increased frequency of urination, stronger urges to urinate, changes in urination or urinary leakage/ incontinence) • Bowel problems (difficulty emptying stool, long-term loose stool, leakage/incontinence) • Sexual problems (pain/ discomfort with sexual activity, alterations in sexual arousal and/or orgasm) • Pain (lower abdomen, hips, buttock, low back, genital area) • Pelvic Pressure (sensation of heaviness in the pelvis or the vagina) If you are having any of the problems listed above, I would strongly encourage you to talk to your medical doctor about it, and seek out an evaluation by a skilled pelvic floor physical

help babies sleep: duplicate the feeling of being in the womb by hindi zeidman Do you ever wonder why babies love being swaddled? The technique of swaddling is a timeless practice that has been used throughout the ages. Swaddling your newborns, or wrapping your babies snuggly in a blanket, can help them feel safe and secure in the early weeks after birth. Chances are your nurse will do this in the hospital after your twins’ birth and many parents even take a class before their babies are born to learn the swaddling technique. Babies like the feeling of swaddling because it reminds them of being in the womb. It gives them security and warmth. If your babies squirm and cry when they are being swaddled, it means they’d rather have their arms and legs free. If this happens, just try wrapping them more loosely in the blanket. Once your babies can roll over, they should no longer be swaddled, as it restricts movement and will not allow them to safely lie on their tummy or return to their back.

Naturally, there are many benefits to swaddling. Here are just a few: • Helps infants sleep longer and reduces spontaneous arousal • Helps to keep infants in the supine position • Soothes pain and reduces crying among irritable infants • Reduces the risk of SIDS (Sudden Infant Death Syndrome) • Preterm infants show improved neuromuscular development, less physiological distress, better motor organization and more self-regulatory ability To make sure your baby gets the most benefits out of swaddling, here’s what to look for in a swaddle: • The fabric or material should have some give to reduce the risk of hip dysplasia • It should also have moisture wicking properties to keep baby dry and comfortable • It should have an opening to easily change baby’s diaper • It should have the flexibility to be used snuggly or loosely as different babies have different needs Happy Swaddling! Hindi Zeidman is the founder of Ollie Swaddle, the cozy swaddling solution designed to decrease fussiness, assist in self-calming, and ultimately improve baby’s quality and duration of sleep. As a parenting and baby expert, Hindi helps moms and dads navigate the ups and downs of parenting. She covers topics ranging from the best ways to swaddle, how to soothe and calm your baby, best bedtime routines for baby, and more. To learn more, visit The Ollie World.

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something new + sweet in minnesota

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The Fetal Health Foundation began with a little known 5K event that originally hosted around 500 participants in the Denver area no more than just a few years ago. Now, after nearly 14 years, the more recently renamed event, The Great Candy Run, boasts more than 7,000 participants and has been named one of the best 5Ks for families in Colorado. But the "sweet" doesn't stop there... Last year, on October 14th, The Great Candy Run expanded its reach and was hosted in Minnesota for the first time. Families from all over the twin cities area came to celebrate the lives of their babies who were healthy and to honor those lost to a fetal syndrome like TTTS, LUTO, SIUGR, among so many others supported by the Fetal Health Foundation. The event, a 5K run/walk with a competitive Stroller Division and branded the sweetest finish ever, was sponsored by the Midwest Fetal Care Center in conjunction with Children's Minnesota and Allina Health. "You plan and plan for months on end and then you get to the day and some how, some way, everything falls into place exactly how it's suppose to go," said Race Director, Stacy Hvinden. With over 300 participants for its first year, the event included a 5K run/walk, a free Kids Fun Run, a sweet finish for everyone with lots of candy and even some cash prizes, a costume contest, games

and activities for the kids, and even a vendor expo with local businesses represented. "The smiles on their faces were completely priceless and made all those stressful days worth it," said Stacy. This year, the event is set for Saturday, October 13th, and organizers hope to more than double in size, in both participants and sponsors/expo vendors. Stacy said, "We received all positive feedback and hope that will drive the momentum to help spread the word on how great and fun our race is." All of the day's events, combined with the fact that proceeds benefit the Fetal Health Foundation in supporting research and families affected by a fetal syndrome, makes The Great Candy Run a family favorite in any city across America. It has been hosted in other cities in past years, including Los Angeles, Charlotte, Seattle, and Atlantic

Beach/Jacksonville. Its flagship event in Denver caters to runners young and old, featuring many elite runners, as well as Girls on the Run of the Rockies program participants, which provides around 1,500 runners on its own. "I think what drives people to participate and return each year is because of the fun of everything that goes into this race," said Denver Race Director and Fetal Health Foundation Founder, Lonnie Somers. "It's not your typical 5K. From the prizes and the giveaways, to the treats along the race route and at the finish, as well as the decorations and nostalgic feel to it all, it's just a fun race with a great charity behind it all." Interested in bringing The Great Candy Run to your hometowm? To learn more about the event or its host cities, visit www. thegreatcandyrun.com or contact michelle@ fetalhealthfoundation.org. connexions

healthy meals in the kitchen with

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sweet potato pancakes Ingredients: *pancake mix (all ingredients needed for recipe) *2 pouches NurturMe Hearty Sweet Potatoes *2/3 cup water *pad of butter *sliced fruit (optional) Instructions: Prepare pancake mix according to box instructions. Add 2 pouches of Hearty Sweet Potatoes and stir. Add 2/3 cup of water and stir. Prepare pancakes on a hot griddle, serve warm, and top with fresh fruit slices.

scrumptious squash mac n’ cheese

carrot/sweet potato/ raisin/turkey sliders

plump peas froggy pasta

Ingredients: *Box Of Mac N’ Cheese *1-2 Pouches of NurturMeals Scrumptious Squash *½ - 1 cup Milk

Ingredients: *1 Teaspoon of olive oil *1 Yellow onion *2 Cloves of garlic minced *3 lbs. of lean ground turkey *2 Tablespoons reduced sodium Worcester sauce *½ Teaspoon fresh ground black pepper *24 Mini dinner rolls, halved *24 Sliced dill pickles (optional) *¼ cup sugar free ketchup *Tomato and lettuce slices (optional)

Ingredients: *Pasta of choice *1 tbsp butter *1-2 pouches of NurturMe Plump Peas *½ - 1 cup milk

Instructions: Prepare Mac & Cheese according to box instructions. Add 1 or 2 pouches of Scrumptious Squash and stir. Add milk to achieve your desired consistency. Serve warm.

sweet banana summer smoothie Ingredients: *1 pouch NurturMe sweet bananas *½ - 1 cup milk or yogurt (depending on how thick/creamy you would like it) *1 cup ice Instructions: Combine one pouch of Sweet Bananas and either a 1/2 cup milk or 1/2 cup of yogurt in a blender. Add in a scoop of ice and blend until smooth. Call your kiddos to the table, serve and watch it disappear!

Instructions: In a mixing bowl, add 2 pouches of NurturMeals carrots, raisins and sweet potatoes with water. In a separate mixing bowl, mix the olive oil, minced onion and minced garlic. Then add the NurturMeal mixture and ground turkey, followed by fresh ground black pepper and salt to taste. Mix until thoroughly combined. Then, form the meat into approximately 24 mini sized patties. Preheat your grill on high. Once screaming hot, add the sliders to the grill. Cook for about 7 minutes each, flipping once at 3 minutes. Remove the sliders from the grill to a clean platter and allow to rest for a few minutes. Briefly toast the halved dinner rolls on the grill. Once toasted, place each of the sliders between buns, and top with pickles and sugarfree ketchup. Yum!

Instructions: Prepare the pasta according to box instructions. Mix in 1 extra tablespoon of butter. Froggy Sauce prep: Combine 1 to 2 pouches of Plump Peas with ½ – 1 cup of whole milk, then stir. Slowly pour the Froggy Sauce over the pasta.

crisp apple pudding Ingredients: *1 Cup Organic Vanilla Yogurt *1 Pouch NurturMe Crisp *Apples *A Pinch of Cinnamon (optional) Instructions: Combine 1 pouch of Crisp Apples with 1 cup of organic French Vanilla yogurt. Simply stir and serve. For added flavor, sprinkle cinnamon on top.

To learn more about NurturMe, or for more recipes, visit nurturme.com.

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We found out we were pregnant with Douglas in the spring of 2013, and were excited to be adding to our family. We went for our 19 week ultrasound in July, and were hoping to find out if we would be having a boy or girl. Instead, we found out devasting news. The OB practice where we went had never seen an ultrasound image like ours before --- the baby's belly was so large and full of fluid --- and couldn't give us a diagnosis for our baby.

living fully

in spite of prune belly syndrome by sherry habbe

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We were heartbroken; we didn't know if that would be the one and only time we would see our baby alive with a heartbeat.

I called the St. Louis Fetal Care Institue (FCI) and made an appointment. Needless to say, I was scared, nervous, and was also hopeful that we would receive a diagnosis and we would be able to save our unborn child. At the Fetal Care Institute (FCI), we met with Dr. Vlastos, who did a thorough ultrasound and gave us our diagnosis --- it was a bladder outlet obstruction, or BOO. It essentially is a blockage in a babyâ&#x20AC;&#x2122;s bladder that restricts or prevents the flow of urine out of the body, and is also referred to as lower urinary tract obstruction (LUTO). It varies in severity from mild, requiring minimal treatment after birth, to very severe, causing serious kidney problems and requiring surgery. Our son's case was severe and would require surgery if we wanted to give him any chance of survival.

Exactly one week after having our first ultrasound, we went into the operating room for fetal surgery. Dr. Vlastos did a Fetal Cystoscopy --- a minimally invasive procedure involving the insertion of a small fiber optic scope into the fetal bladder. This scope is used to remove the fetal obstruction, which improves the odds that the baby will have functional kidneys and lungs, and need less intervention after birth. In addition to the Fetal Cystoscopy, Dr. Vlastos also placed a Vesicoamniotic Shunt. One of the most common fetal procedures, the shunt is a small flexible tube that is placed through the skin and into the babyâ&#x20AC;&#x2122;s bladder, allowing urine

to pass into the amniotic cavity (the bag of water). The shunt can increase the potential for normal function in the fetal kidneys, bladder, lungs, and amniotic cavity. We were lucky that our son did not pull out the shunt after surgery; he was born with it still in place. Not long after surgery, we received a diagnosis of EagleBarrett Syndrome, or more commonly known as Prune Belly Syndrome (PBS). This is a condition characterized by a lack of abdominal muscles, causing the skin on the abdominal area to wrinkle and appear "prune-like", undescended testicles in males, and urinary tract malformations. At one end of the spectrum, the condition may cause severe kidney and pulmonary problems incompatible with life; at the other end, the condition may cause few, if any, urological abnormalities. The cause of PBS is unknown, and treatment varies, including the surgical management of symptoms. Prune Belly Syndrome occurs in 1 in 40,000, and half of those who have the syndrome die by age 2.

Douglas was born at 35.5 weeks at SSM St. Mary's and was immediately transfered to the NICU at SSM Cardinal Glennon, where he remained for 84 days. Douglas was born with stage 4 chronic kidney disease, but with multiple surgeries (the first within hours of being born), and medications, he has improved to stage 3 chronic kidney disease, and remains stable. Doctors have determined that only one of his kidneys provide him any function, and his right kidney did not develop properly in utero; Douglas has multi-cystic dysplastic kidneys. Since birth, he has had multiple long and trying surgeries to correct these anomalies, but we are very thankful that Douglas is a thriving 4 year old boy. Despite his condition and all odds, he continues to defy expectations. He continues to grow and amaze us every day. He has taught me what true love is, and what true strength is. Most people never get the chance to meet their superhero; I gave birth to mine.

the habbe family: rylee with mom, sherry, and douglas with dad, rh

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Owen & Bennett, 11 TTTS Survivors

Gabriel, 3

Urethral Atresia Survivor 56

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Charlie & Andy, 9 by susan rassette TTTS Survivors

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saving the sickest baby in the hospital "If we had gone to any other hospital in the world, Noah would not have survived." —Melissa Lindsay, Noah's mom

Born in early 2016 with congenital diaphragmatic hernia (CDH), Noah Lindsay had a 20 percent chance of survival, due to the severity of the defect. Following his delivery at the Colorado Fetal Care Center (CFCC) at Children's Hospital Colorado, he showed few signs of overcoming his grim prognosis, 58 connexions

and went on extracorporeal membrane oxygenation (ECMO) five hours after birth. He stayed on heart-lung bypass for 18 days; despite successfully separating from ECMO, his lungs were so fragile he required heavy sedation and prolonged medical paralysis.

Neonatologist Jason Gien, MD, and the CDH team attempted many ventilator strategies to stabilize Noah's breathing — including various types of conventional ventilation and high-frequency oscillatory ventilation. Despite the team's best efforts, Noah's overall health didn't improve. On March 24, when Noah was less than three months old, caregivers began implying there was nothing else they could do — his oxygen saturations were dangerously low, and there wasn't an apparent cause. Warren and Melissa Lindsay, Noah's parents, feared that Noah couldn't survive

much longer. That day, nurse visits felt more like goodbyes, Melissa remembers. In a last attempt to save Noah, the CDH team recommended a heart catheterization to gather more information about the low oxygen saturations and better understand his failure to improve from a clinical standpoint — a risky procedure for a patient caregivers had called, "the sickest baby in the hospital." The catheterization results were devastating: they showed that Noah had multiple pulmonary arteriovenous malformations (AVMs) in the lungs. Pulmonary AVMs are arteries that join with veins without passing through the capillary bed, Dr. Gien explains. This creates a shunt, where blood passes from the pulmonary arteries to the pulmonary veins and fails to get oxygenated, resulting in low oxygen levels. This was why Noah was dying.

Treating Noah's pulmonary AVMs Though there were records of pulmonary AVMs in the lungs of babies with CDH and other pulmonary disorders at autopsy, the occurrence of these AVMs had never been documented in a living patient. What was causing the pulmonary AVMs, the care team didn't know. Melissa and Warren went to bed that night awaiting their son's imminent death. Meanwhile, Dr. Gien and the CDH team spent hours

researching all possible causes of the pulmonary AVMs. They shared their findings with a world-renowned team of experts in pulmonary hypertension: John Kinsella, MD, neonatologist; Steve Abman, MD, pediatric pulmonologist; and Dunbar Ivy, MD, pediatric cardiologist. Together, they surmised that the pulmonary AVMs were occurring because Noah didn't have enough blood vessels in his lungs to handle the volume of blood passing through them. Perhaps if they closed Noah's patent ductus arteriosus (PDA) — the open connection between the aorta and the pulmonary artery — it would decrease blood flow to his lungs and prevent blood from passing through the AVMs. This ran counterintuitive to CDH care; usually, babies with CDH need the PDA open to decrease pressure in the lungs. Closing it was incredibly risky, but Noah had no other options for survival. "'We need to be bold,'" Warren remembers Dr. Gien telling them in their care conference on March 25. "'My view is that as long as there is hope we need to fight for Noah's life. We want to operate.'" The team performed a PDA ligation that night. This wasn't just a precarious surgery, given Noah's circumstances. It was unprecedented. David Campbell, MD, pediatric cardiothoracic surgeon, operated on Noah, making an incision

across Noah's chest and around his ribs to access the PDA. It was a much longer, more intense surgery than Drs. Campbell, Gien, Ivy, Kinsella or anyone else in the operating room had imagined. Noah lost a lot of blood. Nevertheless, Dr. Campbell successfully closed the PDA. Three days later, despite multiple crises, Noah stabilized. A follow-up heart catheterization confirmed that the AVMs had resolved.

Outpatient CDH care and long-term management

Over the next six months, under the care of a dedicated primary nursing team in the NICU, Noah progressed. By October, Melissa and Warren were planning their discharge back to their home in Illinois. The safest way to transport Noah was through an Illinois hospital. Though Melissa and Warren only expected him to stay there a few days, he ended up staying two weeks. Then, 27 days later, he spent another two months in that NICU. Throughout his stays at that hospital, Children's Colorado pediatric nurse practitioner Alicia Grenolds, CPNP, checked in with Melissa and Warren every week. "It was a time that we felt helpless and hopeless," Melissa says. "If it weren't for Alicia, we would be lost. She goes above and beyond for our family." About four months and two hospital stays in the Illinois hospital, the Lindsays drove connexions

back to Colorado after being discharged, eager to get back to the hospital that knew Noah best. A week after being readmitted to Children's Colorado, under Noah's original care team, "He was noticeably happier," Warren says. "He was less tired." Today, Noah laughs and babbles like a healthy baby. He still has a g-tube and needs oxygen, but he is no longer in the hospital. "He's going to do great," Warren says of Noah's future. Warren and Melissa wanted to keep Noah's outpatient care at Children's Colorado, but their home and family were in Illinois and they didn't want to relocate. They convinced Noah's large multidisciplinary team to allow them to stay in Illinois and treat him remotely from Colorado. What that means is that pediatric nephrologist Jens Goebel, MD, emails them weekly to adjust Noah's ace inhibitor and diuretics as needed, since he has a history of acute kidney injury. It means that Alicia works with Noah's Illinois pediatrician to monitor his pulmonary hypertension through orders, tests and labs, and coordinates care between his specialists in Colorado. It means that a Children's Colorado hematology physician contacted them before Noah had a corrective surgery on Sept. 28; they monitored labs in Illinois and discussed a preand post-operation plan for 60

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anticoagulants. It's a complicated setup, but it's what the care team and the Lindsays are willing to do to ensure Noah receives the best care possible. And it won't last forever. For now, the Lindsays bring Noah back to Colorado for checkups every three months, but that will taper to six months, and then to just once a year.

"It reflects that the team created a plan for him when he left, rather than just passing him off to the Illinois docs," Melissa says. Why the Lindsays chose the Colorado Fetal Care Center At Melissa's 18-week ultrasound in Illinois, a maternal fetal medicine (MFM) specialist found an anomaly and diagnosed their fetus with CDH. That MFM didn't see many babies with this condition; according to Melissa, she didn't know of any CDH specialists in the state. Their MFM connected them to a family that pointed them to one of the world's leading centers for CDH and one of the few centers in the country approved for fetoscopic

endoluminal tracheal occlusion (FETO) for severe CDH: the Colorado Fetal Care Center at Children's Colorado. The team responded to their inquiries immediately. "We knew Children's Colorado was the place we wanted to focus our attention," Warren adds. "That was a pivotal moment." The Lindsays flew to Colorado twice during Melissa's pregnancy. For the first visit, a care coordinator scheduled all their appointments so they could move from one provider to the next â&#x20AC;&#x201D; all in the same place, on the same day. The level of customer service they received felt dramatically different than any other care facility. "It eliminated a lot of stress for us," Melissa says. "It was beautifully structured." At the end of that first day, Melissa and Warren gathered in a conference room with the specialists who would be involved in their care: a maternal fetal medicine specialist, fetal and pediatric surgeons and neonatologists. They explained CDH in detail, what they could expect for the remainder of the pregnancy, at delivery, after delivery in the NICU, and long-term outcomes. "All of them had a thousand times more information about CDH than what we were receiving in Illinois," Melissa says. "It was mind-blowing." The care team projected an

infant stabilization room where the team intubated him, placed arterial and venous catheters, and stabilized him so he could transfer to the NICU, just down the hall from the delivery room.

CDH survivor

In the NICU, "They were very, very busy," Warren remembers. "But they still made an effort to let us have a special moment with him. We really appreciated that." A few hours later, Noah went on ECMO. Noah, with his parents Warren and Melissa Lindsay image of Melissa's ultrasound and walked the Lindsays through the diagnosis. It was far worse than anyone in Illinois had told them. "It's a really horrible thing to hear, but when you have a team like that giving you every answer you could want and need, you have every tool to make the best decisions for your child's care," Melissa says.

What makes a good doctor

For the rest of Melissa's pregnancy, she and Warren emailed questions to the members of their team at CFCC A day later, a physician or nurse would call them and answer their questions. That attentiveness never changed. "It has been present the entire time we've been with Children's Colorado," Melissa says. Melissa delivered Noah at CFCC via cesarean section. For every CDH delivery, the same team of specialists from

the Colorado Fetal Care Center gathers in the delivery room and the adjacent infant stabilization room â&#x20AC;&#x201D; that includes neonatologists like Drs. Gien and Kinsella; obstetrician Frank Chow, MD; maternal fetal medicine specialist Henry Galan, MD; and fetal surgeons Kenneth Liechty, MD, and Rony Marwan, MD. Because babies with CDH require resuscitation immediately after birth, it's imperative that the teams move swiftly, and without error. Having the same people there for every delivery ensures greater consistency, it builds individual and team expertise, it makes for a calmer delivery, and it makes for a more stable transition to life outside the womb. Seconds after Noah's birth, caregivers whisked him to the

He would go on to spend the first 10 months of his life in the NICU at Children's Colorado. One of the Lindsay's biggest reasons for returning to Colorado, which they emphasize to this day, was Alicia. "She truly helped us feel like our son was safe again," Melissa says. "Trust plays such a huge role in having any peace of mind when you have a child as fragile as Noah. She gave that peace of mind back to us and hasn't let us feel helpless or hopeless again since then, even while on the other side of the country." In total, more than 50 nurses and specialists kept Noah alive and growing while he was an inpatient at Children's Colorado. "What they did came from a deeper place than being a good doctor or nurse. You cannot find many people that are geniuses and have such incredible hearts," Melissa says. "At the end of the day, they loved our son." connexions

The leading patient advocacy group for families facing a fetal syndrome diagnosis.

No one loves a happy ending more than us. Be the HOPE by helping support a family in one of their darkest hours. Donate today. www.fetalhealthfoundation.org 62 connexions

Connexions Spring 2018

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