Connexions Spring 2023

conneXions www.fetalhealthfoundation.org

spring 2023

linking the medical & personal worlds

of fetal syndromatic issues

scars of hope:

zayne's story & the impact of fetal therapy

changing careers fetal therapy hope for genetic disorders great candy run turns 20 1

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The image depicted contains models and is being used for illustrative purposes only. Janssen Research & Development, LLC © JRD, LLC 2022

Creating a future where rare disease is a thing of the past.

We are Janssen, the Pharmaceutical Companies of Johnson & Johnson.

Bold Thinkers. Big Dreamers. Fearless advocates on behalf of patients. So that one day, the world’s most daunting rare maternal-fetal conditions, including hemolytic disease of the fetus and newborn (HDFN), fetal/neonatal alloimmune thrombocytopenia (FNAIT) and congenital heart block (CHB) will be found only in the pages of history books. Learn more at www.janssen.com

a look at the inside...

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special feature: treating severe CDH with FETO: expert care + support from before birth and into toddlerhood

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special feature: world’s first stem cell treatment for spina bifida delivered during fetal surgery

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work smarter, not harder!

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scars of hope: zayne's story + the impact of fetal therapy

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special feature: twin-twin transfusion syndrome: survivors + best buddies

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information you can trust, for a lifetime

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special feature: fetal therapy offers hope for patients with rare genetic disorders

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au pair care: an affordable childcare option

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special feature: developing new treatments for allo-antibody driven diseases

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changing careers

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infant loss support: being a loving, supportive presence is worth a thousand words

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the great candy run: foundation's flagship event turns 20

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cover photo courtesy of Codi Bear

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letter from the editor...

Pregnancy is one of the most beautiful events of most of our lives. It's a moment often taken for granted, until the unthinkable occurs and you learn there is something wrong with your baby. From feeling numb and everything seeming like a blur, most people, when going through a fetal syndrome diagnosis, do not even hear what the doctor has explained. It takes time...time to step away from the fear and anxiety, in a moment when it feels like time stands still. All you wanted was to start or add to your family. What you never expected was to hear that your baby was in danger and that you may never hold them in your arms or take them home from the hospital after a routine, healthy and successful delivery.

It's because of times like these that the Fetal Health Foundation was created. We have felt that numbness, that blur, that void when time stands still and what we had hoped and dreamed felt like it might evaporate before our eyes. Everyone behind the Foundation works hard to make sure that we can connect you to the right information on your diagnosis, to the right options for treatment, and to the right centers that can provide that possibly life-saving treatment. There are some extremely talented and amazing fetal care teams around the United States (and the world, to be sure!), all who want to put your mind at ease in helping you get the care your baby needs. They make every effort to walk with you on your journey from diagnosis to treatment, and even beyond, to ensure your delivery goes as according to plan as possible. The Fetal Health Foundation works with them to make sure you know how to connect when it is needed most.

Time can absolutely be a thief. With these amazing teams of experts and the Fetal Health Foundation on your side, if ever faced with a fetal syndrome diagnosis, we make sure you know your options in making the best choice and advocating for you and your baby.

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Contributors: jasmyne aragon erika k. wolf katie abouzahr, m.d. michelle somers kimberlee bow

Connexions magazine is an award-winning, annual digital and print publication produced and distributed for the fetal medicine community by the Fetal Health Foundation,. The Foundation is a nationally registered 501(c)(3), non-profit organization based out of Colorado.

You can follow the Foundation through monthly newsletters, on our blog, and across social media.

Cincinnati Children’s Fetal Care Center

“We are with families every step of the way to provide hope and outcomes that truly matter when faced with the most complex fetal diagnosis.”

— Foong-Yen Lim, MD Fetal Care Center Surgical Director

One team, one roof, one comprehensive plan.

At Cincinnati Children’s Fetal Care Center, our multi-disciplinary team of experts is here to provide compassionate, comprehensive care to meet the health needs of you and your baby.

Our Center is distinctly different from other fetal care clinics. Families come to us for continuity of care that begins with prenatal counseling and continues well after their child is born. We can provide screening, testing and intervention services that can improve your baby’s overall well-being. Our Special Delivery Unit is one of the world’s only birthing centers located inside a pediatric hospital — so you’re able to recover down the hall from your baby. And from the moment your baby is born, they are surrounded by the expertise, excellence and exceptional care that only Cincinnati Children’s NICU and CICU can offer.

cincinnatichildrens.org/fetal

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treating severe CDH with FETO: expert care + support from before birth and into toddlerhood special editorial submitted by friends steward partner, Cincinnati Children's Fetal Care Center 6

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Trey is a typical toddler, happily crawling and walking everywhere.

His development before birth was anything but usual.

When mom Nora was 24 weeks pregnant, her obstetrician noticed something unusual during an ultrasound. Trey’s heart was pushed to the side, and there was excess fluid in his chest.

The doctor referred Nora and her husband Tim to a maternalfetal medicine (MFM) specialist near their home in Indianapolis.

Trey was diagnosed with a severe right-sided congenital diaphragmatic hernia (CDH).

CDH is a rare condition that occurs when a baby’s diaphragm—the layer of muscle between the abdominal and chest cavities—doesn’t close properly.

Right-sided CDH is rarer than leftsided CDH. In Trey’s case, a large portion of his liver and intestines pushed

through the opening in his diaphragm and into the chest cavity. The overcrowding organs in his chest put pressure on his heart and lungs, preventing them from developing normally.

understanding options: reasons for hope

The MFM specialist sent Nora and Tim to Cincinnati Children’s Fetal Care Center for a consultation. During a twoday visit, they learned that Trey’s condition was more severe than they realized. Nora and Tim met with fetal care experts, including neonatologists, MFM doctors, fetal nurses and Foong-Yen Lim, MD, surgical director of the Fetal Care Center.

Dr. Lim and the team talked with Nora and Tim about: • Treatment options • How Trey might be affected • Challenges and roadblocks Trey might face after birth

Cincinnati Children’s offers a specialized treatment for CDH called fetoscopic endoluminal tracheal occlusion (FETO). This procedure places an inflated balloon in the trachea (windpipe), blocking the airway. This promotes lung growth by building up fluid and pressure in the developing lung.

The team was transparent with Nora and Tim, explaining that FETO may not work for Trey, Dr. Lim says. “We wanted them to feel supported, regardless of how they decided to proceed.”

Nora says Dr. Lim and other specialists “went out of their way to make sure that we had choices and we were an equal part of the team.”

The couple’s biggest questions for Dr. Lim dealt with CDH specifics, along with the FETO procedure and how Trey might be affected.

“We really wanted to understand what that could possibly look like, Nora says. “They answered all of our questions.”

After the first day of appointments, Tim says he and Nora felt a sense of peace thanks to several factors, including the collective expertise of the fetal care team and the resources available to them across numerous divisions and departments at Cincinnati Children’s.

“We both got in the car after the appointment and knew we were going to Cincinnati Children’s,” Nora says. “In order to feel like we did everything to help Trey survive and thrive, we knew it was where we needed to be.”

carefully managed care

Cincinnati Children’s is highly skilled in treating CDH and in using the FETO procedure for children with severe CDH. The fetal care team strives to improve the

“In order to feel like we did everything to help Trey survive and thrive, we knew it was where we needed to be.” care environment for babies with the most severe CDH, Dr. Lim says.

Tracheal occlusion improves the management of severe CDH patients “from the moment they are born,” Dr. Lim says. “Hopefully, they will be slightly different babies compared to if they did not have the FETO intervention.”

Tracheal occlusion accelerates lung growth that otherwise would not be possible in a baby with a severe hernia.

“We still don’t fully understand how it works or why some patients have a great response while others have minimal to no response,” Dr. Lim says.

Because there is no way to identify which patients will or will not respond well to the therapy, FETO is only offered to patients with the most severe CDH. In most cases, Cincinnati Children’s can successfully manage less severe cases of CDH with other treatments.

“For those who historically we struggle to get them through all the hurdles, we hope that this can have a positive impact on the outcome,” Dr. Lim says.

FETO is not a guaranteed cure.

Currently, 80% of patients who receive FETO for severe CDH survive and are discharged from the hospital; while survival for mild CDH approaches 100%.

the FETO process

Tim and Nora chose to move

forward with the FETO procedure for Trey. Families that choose the FETO treatment at Cincinnati Children’s commit to living in Cincinnati for months before and after their child is born.

The decision shows a family’s passion to do all they can for their child’s care. Dr. Lim hopes that Tim, Nora and Trey’s story inspires other families and shows them it is possible to go through the process of managing a challenging diagnosis with care and support.

“It’s a difficult journey, and the outcome isn’t always rosy,” Dr. Lim says. “But there are things we can do for patients despite some severe conditions.”

Dr. Lim, Jose Peiro, MD, Kara Markham, MD, and David McKinney, MD, performed Trey’s surgery. Tim received regular updates from a nurse in person and by text message. The fetal team takes it a step further with updates after each stage of the procedure.

“They texted me play-by-play updates. It was awesome,” Tim says. “My wife and my baby were in there—my whole world—so it was good to have those updates to know what was going on.”

After the procedure, the care team provided Tim with a full recap. Once Nora came out of sedation a few hours later, the team gave her a full update.

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close to Cincinnati Children’s in case mom goes into labor before the balloon in the trachea is removed. If labor occurs while the baby’s airway is still obstructed, specialists perform a c-section and remove the balloon right away, Dr. Lim says.

Babies whose tracheal balloon is removed before birth (usually at 34 weeks) can safely be born vaginally.

Tim and Nora stayed in Cincinnati.

Trey’s tracheal balloon was removed a few weeks after the original FETO procedure. The couple continued their Cincinnati stay so that Trey could receive the best possible care until his birth.

CDH babies treated with FETO are less likely to need a heart-lung bypass machine or extracorporeal membrane oxygenation (ECMO) after birth.

“If we can avoid ECMO in some of these babies, that is a good response,” Dr. Lim says. “It doesn’t guarantee survival, but so far, all babies who did not need heartlung bypass have survived.”

a psychosocial journey

Trey had a good response to the FETO procedure. Born in June 2021, he spent three months in the newborn intensive care unit (NICU). He was on ECMO for 18 days. During that time, Beth Rymeski, DO, and Dr. Lim repaired his large right-sided diaphragmatic hernia.

Trey spent three months in the Cincinnati Children’s Newborn Intensive Care Unit (NICU) before going home; Trey celebrated his first birthday with a cupcake (and a little icing).

It was a difficult time for them.

Every family who receives the FETO procedure undergoes careful diagnosis and counseling. There are risks with the procedure. Most babies are also born early, which comes with additional risks.

“This is not trivial,” Dr. Lim says.

“The family goes through all kinds of thinking processes, not knowing if this will work for their baby.”

Families eligible for FETO must meet selection criteria set by the Food and Drug Administration.

They must have a severe CDH diagnosis. Their babies cannot have any major conditions that could significantly impact the procedure outcome, such as other significant congenital anomalies or genetic conditions.

“For the first month, we weren’t even able to hold him,” Nora says. But she and Tim remained focused on what was best for Trey and continued to ask questions and provide input as active care team members.”

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Not every family offered FETO as an option chooses the treatment, Dr. Lim says.

Once babies are born, hernia repair surgery takes place as soon as the infant is stable. For babies with extremely severe CDH who cannot come off ECMO without the hernia repair, doctors make the correction within a few days of birth, Dr. Lim says.

family engagement key to baby’s recovery and development CDH babies treated with FETO

typically remain in the NICU for a while after their hernia repair, as Trey did.

That time gives the family many opportunities to learn about their baby and the care they need. Parents of fetal patients absorb so much information that by the time the baby is born, they are more knowledgeable about the baby than some of the providers caring for them, Dr. Lim says.

Indeed, Tim and Nora say they learned a great deal during daily meetings with the team.

“We had a crowd every day for rounds,” Tim says. “They were all great.”

Dr. Lim and the Fetal Care Center are “still actively studying the severe CDH patient population to see how they can improve care in the future.”

Children treated at Cincinnati Children’s are doing well. Dr. Lim recalls a patient who is now 6,

and another who is 4. In total, 50 FETO procedures have been completed worldwide by the surgeons at Cincinnati Children’s Fetal Care Center.

FETO diagram...

Trey, who is now more than a year old, continues to progress.

He’s an active toddler. He’s off oxygen, is growing and reaching developmental milestones like crawling and eating.

Dr. Lim says a big reason for Trey’s success is his family’s engagement in his care. Family involvement helps a lot of these patients realize their full potential.

Of course, Nora and Tim will do whatever Trey needs to live his best life.

“We knew we had to be strong for him,” Nora says. “In our minds, we’re focused on going forward.”

That’s what Dr. Lim likes to hear—that patients and families have options and hope.

cincinnati children's fetal care center We are here to provide you and your baby with personalized care, from the day of your diagnosis to the day you bring your baby home. Our top experts in the nation for fetal care and our innovative treatment options bring real hope to patient families with outcomes that can change the path of your baby’s life.

Contact us for more information and resources. We’re available for consultation, transfers, or referrals 24 hours a day, seven days a week.

1-888-338-2559 cfcreferral@cchmc.org www.cincinnatichildrens. org/fetal

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Delivering the best care when it matters the most As Sacramento’s No. 1 hospital and one of Newsweek’s Best Maternity Care Hospitals, we understand that you and your baby’s needs are unique. That’s why our experts work together to provide safe and ready world-class fetal care, so you and your little one can live a healthier life.

With advancements in fetal surgery, the best expertise for high-risk pregnancies, plus a renowned spina bifida research program, you’ll always have an extraordinary team behind you with the Fetal Care and Treatment Center.

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Proud to offer: ■

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Access to more than 2,500 clinical trials and the latest diagnosis and treatment options The region’s only nationally ranked level IV Newborn ICU Inland Northern California’s only fetal care and treatment center A state-of-the-art level I children’s surgery center with pediatric anesthesiologists and dedicated pediatric surgeons available 24 hours a day

fetalcare.ucdavis.edu

world’s first stem cell treatment for spina bifida delivered during fetal surgery groundbreaking trial aims to reverse the paralysis and other abnormal functions of spina bifida before birth special editorial submitted by friends steward partner, UC Davis

all photos courtesy of uc davis health

special feature

Diana Farmer, M.D., and Shinjiro Hirose, M.D., during surgery at UC Davis Health

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Four babies have been born after receiving the world’s first spina bifida treatment combining surgery with stem cells. This was made possible by a landmark clinical trial at UC Davis Health.

The one-of-a-kind treatment, delivered while a fetus is still developing in the mother’s womb, could improve outcomes for children with this birth defect.

Launched in the spring of 2021, the clinical trial is known formally as the “CuRe Trial: Cellular Therapy for In Utero Repair of Myelomeningocele.” Thirty-five patients will be treated in total.

The four babies from the trial that have been born so far will be monitored by the research team until 30 months of age to fully assess the procedure’s safety and effectiveness.

The first phase of the trial is funded by a $9 million state grant from the state’s stem cell agency, the California Institute for Regenerative Medicine (CIRM).

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level. Together, they launched the UC Davis Health Surgical Bioengineering Laboratory to find ways to use stem cells and bioengineering to advance surgical effectiveness and improve outcomes. Farmer also launched the UC Davis Fetal Care and Treatment Center with fetal surgeon Shinjiro Hirose and the UC Davis Children’s Surgery Center several years ago.

Above: Diana Farmer, M.D., Emily and Robbie, 16 days after her birth; below: Emily and Robbie, 15 days after her birth affects 1,500 to 2,000 children in the U.S. every year. It is often diagnosed through ultrasound.

While surgery performed after birth can help reduce some of the effects, surgery before birth can prevent or lessen the severity of the fetus’s spinal damage, which worsens over the course of pregnancy.

of life for so many patients to come,” said Emily, the first clinical trial participant who traveled from Austin, Texas to participate. Her daughter Robbie was born last September. “We didn’t know about spina bifida until the diagnosis. We are so thankful that we got to be a part of this. We are giving our daughter the very best chance at a bright future.”

Spina bifida, also known as myelomeningocele, occurs when spinal tissue fails to fuse properly during the early stages of pregnancy.

The birth defect can lead to a range of lifelong cognitive, mobility, urinary, and bowel disabilities. It 12

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“I’ve been working toward this day for almost 25 years now,” said Diana Farmer, the world’s first woman fetal surgeon, professor and chair of surgery at UC Davis Health and principal investigator on the study.

the path to a future cure

As a leader of the Management of Myelomeningocele Study (MOMS) clinical trial in the early 2000s, Farmer had previously helped to prove that fetal surgery reduced neurological deficits from spina bifida. Many children in that study showed improvement but still required wheelchairs or leg braces.

Farmer recruited bioengineer Aijun Wang specifically to help take that work to the next

Farmer, Wang and their research team have been working on their novel approach using stem cells in fetal surgery for more than 10 years. Over that time, animal modeling has shown it is capable of preventing the paralysis associated with spina bifida.

It’s believed that the stem cells work to repair and restore damaged spinal tissue, beyond what surgery can accomplish alone.

Preliminary work by Farmer and Wang proved that prenatal surgery combined with human placentaderived mesenchymal stromal cells, held in place with a biomaterial scaffold to form a “patch,” helped lambs with spina bifida walk without noticeable disability.

“When the baby sheep who received stem cells were born, they were able to stand at birth and they were able to run around almost normally. It was amazing,” Wang said.

When the team refined their surgery and stem cells technique for canines, the treatment also improved the mobility of dogs with naturally occurring spina bifida.

A pair of English bulldogs named Darla and Spanky were the world’s first dogs to be successfully treated with surgery and stem cells. Spina bifida, a common birth defect in this breed, frequently leaves them with little function in their hindquarters.

By their post-surgery re-check at 4 months old, Darla and Spanky were able to walk, run and play.

the world’s first human trial When Emily and her husband Harry learned that they would be first-time parents, they never expected any pregnancy complications. But the day that Emily learned that her developing child had spina bifida was also the day she first heard about the CuRe trial.

For Emily, it was a lifeline that they couldn’t refuse.

Participating in the trial would mean that she would need to temporarily move to Sacramento for the fetal surgery and then for weekly follow-up visits during her pregnancy.

After screenings, MRI scans and interviews, Emily received the life-changing news that she was accepted into the trial. Her fetal surgery was scheduled for July 12, 2021, at 25 weeks and five days gestation.

Farmer and Wang’s team manufactures clinical grade stem cells – mesenchymal stem cells – from placental tissue in the UC Davis Health’s CIRM-funded Institute for Regenerative Cures.

The cells are known to be among the most promising type of cells in regenerative medicine.

The lab is a Good Manufacturing Practice (GMP) Laboratory for safe use in humans. It is here that they made the stem cell patch for Emily’s fetal surgery.

“It’s a four-day process to make the stem cell patch,” said Priya Kumar, the scientist at the Center for Surgical Bioengineering in the UC Davis Department of Surgery, who leads the team that creates the stem cell patches and delivers

them to the operating room. “The time we pull out the cells, the time we seed on the scaffold, and the time we deliver, is all critical.”

a first in medical history

During Emily’s historic procedure, a 40-person operating and cell preparation team did the careful dance that they had been long preparing for.

After Emily was placed under general anesthetic, a small opening was made in her uterus and they floated the fetus up to that incision point so they could expose its spine and the spina bifida defect. The surgeons used a microscope to carefully begin the repair.

Then the moment of truth: The stem cell patch was placed directly over the exposed spinal cord of the fetus. The fetal surgeons then closed the incision to allow the tissue to regenerate.

“The placement of the stem cell patch went off without a hitch.

Mother and fetus did great!”

Farmer said.

The team declared the first-of-itskind surgery a success.

delivery day

On Sept. 20, 2021, at 35 weeks and five days gestation, Robbie was born at 5 pounds, 10 ounces, 19 inches long via C-section.

“One of my first fears was that I wouldn’t be able to see her, but they brought her over to me. I got to see her toes wiggle for the first time. It was so reassuring and a little bit out of this world,” Emily said.

For Farmer, this day is what she had long hoped for, and it came with surprises. If Robbie had remained untreated, she was expected to be born with leg paralysis.

was born that she was kicking her legs and I remember very clearly saying, ‘Oh my God, I think she’s wiggling her toes!’” said Farmer, who noted that the observation was not an official confirmation, but it was promising. “It was amazing. We kept saying, ‘Am I seeing that? Is that real?’”

Both mom and baby are at home and in good health. Robbie has celebrated her first birthday.

The CuRe team is cautious about drawing conclusions and says a lot is still to be learned during this safety phase of the trial. The team will continue to monitor Robbie and the other babies in the trial until they are 6 years old, with a key checkup happening at 30 months to see if they are walking and potty training.

“This experience has been larger than life and has exceeded every expectation. I hope this trial will enhance the quality of life for so many patients to come,” Emily said. “We are honored to be part of history in the making.”

the center The UC Davis Fetal Care and Treatment Center is a comprehensive fetal care center, and the second center in California, after UC San Francisco, to offer open fetal surgery.

916-794-BABY (2229) fctc@ucdavis.edu

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photo courtesy of anna shvets via pexels

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Introducing you to Fetal Health Foundation’s Fetal Therapy Think Tank.

We are a diverse consortium of fetal medicine stakeholders working to advance fetal diagnosis and treatment. The key initiatives are:

Support: To provide optimal maternal and fetal safety and outcomes, by promoting standardization and certification for quality of care.

Education: To provide current and factual medical information on various fetal syndromes and anomalies. To generate interest in fetal medicine and provide educational opportunities.

Innovation: To collaborate with various stakeholders and disciplines in sharing and developing solutions that will lead to enhanced outcomes.

We are creating the future for prenatal treatments of fetal syndromes.

Join alongside us for the journey.

Delivering personalized, expert care for complex fetal diagnoses and pregnancies.

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NATL. FETAL SYNDROME AWARENESS MONTH

Join us in August to celebrate the fetal syndrome journey. connexions

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photo courtesy of codi bear

scars of hope:

the impact of

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Our journey as a family was like any other with the news of my pregnancy. However, I was a college athlete at the age of 18 finding out about my pregnancy. My family and I believe that this was a blessing from God in my life. I went to every prenatal appointment with my local OB/GYN with no concerns of health issues for either of us, until almost halfway through my pregnancy.

Due to family history of ADHD and autism, I received a referral for UC Davis in Sacramento, California. I still can remember that day as if it happened yesterday.

The date was April 4th, 2019 when we went to meet with the UC Davis team to discuss the referral provided by my maternity clinic, and they wanted to perform a routine ultrasound. I had my mother alongside me through the day and it all started out happy, with us guessing the gender of Zayne with the ultrasound tech performing the scan. I remember looking at the tech when she asked for us to not look at the screen and her face showed concern. My mother, being a nurse, had a feeling something was wrong by the way the tech turned the screen from us. After the scan was complete she informed us that the doctor would be coming in to speak with us shortly.

The tech and Dr. McLennan came into our room to speak with us about the results. She was very kind, but with sadness, told us the news about Zayne. He was diagnosed with Spina Bifida and Hydrocephalus. As a young mom, I had never heard of either of these. My mother screamed as she went out of the room, knowing the outcome for most of her patients with this diagnosis.

I honestly did not know how to comprehend all this information.

We sat with Dr. McLennan as she discussed our options with us --to continue with the pregnancy to full-term so they can perform surgery on Zayne after birth, for the fetal care team to meet with us to discuss possible fetal surgery while pregnant, or to terminate the pregnancy.

After that discussion, she sent our information over to the fetal care team as we waited for the phone call to come later that week.

My mother and I had a two-and-a-half-hour drive back home to our family to tell them the news. I remember crying the whole drive, blaming myself for what happened as any mother would do, and calling all my family members that were contacting us.

When we returned home, we had family and friends, as well as my mother’s coworkers, embracing us with so much support and love.

As a family, we prayed and discussed the options on what would be best for my son in this world. We all came to agreement that if the fetal care team would approve us for the fetal surgery, that we would move forward with it.

fetal therapy by jasmyne aragon

A week or so later, I met with Dr. Hirose and Nurse Amy to discuss our MRI fetal results to see the best option for us. Zayne had myelomeningocele, which was a type of Spina Bifida that causes an opening in the spine, creating a sack filled with fluid. In Zayne's case, the opening was mainly located on his S2, which also affects his bladder and bowel function. During the scan, Dr. Hirose was connexions

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concerned for how severe his case was involving the hydrocephalus, as well. This extra fluid in the brain prevents normal drainage of the cerebrospinal fluid (CSF), which is the clear, colorless fluid that protects and cushions your brain and spine.

After receiving all this information from Hirose, I looked at my mother and we agreed to push forward for the fetal surgery if the fetal care team approved our case. During this time, I was still a college student balancing all this information. I received a phone call in the middle of a lecture from the UC Davis Fetal Treatment Center. Their main concern was for my age due to just turning nineteen at the time. They feared that I would not be able to have any more children after this surgery was performed due to how high risk it is and complications that can arise.

I considered their concerns, but I wanted what was best for my child, which meant making sacrifices to give him a better chance at life.

Our surgery was scheduled for May 8th, 2019, to be the first case of the day. I had been getting prepped while I had my parents by my side watching and listening to them discuss the plan for this surgery.

We met with Dr. Hirose and his colleagues that morning for one last confirmation to continue forward before being taken back to the OR. My parents walked with me as far as they could go and I remember telling them, “If I am meant to be a mother, God will protect me. If it is my time, please take care of Zayne.”

My mother cried telling me everything will be okay. After just four hours, they woke me up telling me that the surgery was a success and that we were stable. At the time this surgery was performed, I was just 25 weeks pregnant, which meant I had to be on bed rest for the duration of my pregnancy. I was discharged a few days later into UC 20

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Above: Zayne in the NICU at birth; holding his tiny hand in the NICU; Zayne with mom, stepdad and little sister; right: Zayne at the pumpkin patch at 3 years old

Davis housing for close monitoring until my check-up ultrasound with Dr. McLennan. We were informed that we were going to be admitted back into the hospital due to my cervix thinning and needing extra close monitoring there. Once we were admitted back into the hospital, my water broke at 26 weeks and 3 days. They informed me that sometimes mothers can carry the baby for a little while longer with a small leak, but as a risk from fetal surgery, you can go into premature labor.

Zayne, where we learned that he had a diaphragmatic hernia that they did not see in his fetal scans.

After hearing this news, they estimated his NICU stay all the way to December of 2019. As a family, we knew that this was part of our journey to have Zayne.

Zayne was stable for the first week of life until they performed a scan showing that his intestines were crushing his left lung, that was also affecting his heart. They performed this surgery on June 6, 2019, and

My parents walked with me as far as they could go and I remember telling them, “If I am meant to be a mother, God will protect me. If it is my time, please take care of Zayne.”

At 3am, my nurses woke me up to rotate me due to Zayne not being on the monitor. Feeling anxious, I called my father to join me in my hospital room to make sure everything was okay since I was unable to see the monitor. At 5:30am, contractions had started and were within minutes of each other --- I was screaming in pain.

My father ran out the room to get help when the doctors that were on for the night called for an emergency C-section. I was so terrified knowing that I could not have a vaginal birth and feeling my body pushing as I was rushed to the OR. Zayne was delivered at 5:45am on May 19, 2019. I never got to hold him, but was awakened by my mother crying over me in the recovery room.

Zayne was taken to the NICU and I was later taken back to my room when I was stable. The Nurse Practitioner from the NICU came down to give us an update on

We thought our journey of climbing the mountain was nearly over, when Zayne started having absence seizures in October 2019.

This was due to the pressure caused by his hydrocephalus.

His neurosurgeon, Doctor Zweinenburg, met with us to discuss his options after his scan was performed in December.

On January 13, 2020, she performed a surgery called a ventriculostomy, where an external ventricular drain was placed to relieve the fluid pressure on the brain and help a natural flow and healing. During this stay, Zayne experienced a grand mal seizure, which led to him going into respiratory distress after thirteen minutes and a code was called.

it was the hardest day of my life.

I had my brother's graduation that day and had no family there to support me with this surgery.

After hours of waiting for news on Zayne, Dr. Hirose came out with the news that his liver was nicked during surgery and that I had 24 hours with him to see if he would make it. I cried and prayed by his bedside, holding his tiny hand saying the prayer to God, “God if I am meant to be a mother, give him strength. If this is your will to protect him from further pain, please watch over him for me.”

Thankfully, Zayne recovered from this event after his electrolytes were corrected. He left UC Davis with the biggest smile on his face and that was his last surgery before his first birthday. Zayne has been a strong kid with the perseverance in life to keep going.

We as a family have never let his disability affect him. He had his delays, as most kids would after all he has gone through, but he is now coming up on his fourth birthday. Zayne has accomplished so many things on his own, from learning to crawl, to walking with his walker, to now walking independently. He loves to speak, color, hunt, and be with his family.

To everyone’s surprise Zayne powered through and was discharged in August of 2019. He was such a fighter during his stay in the NICU and touched the lives of many, but especially the people that cared for him; RN BSN Wendy, RN BSN Amanda, RN BSN Crystal, RN BSN Kaela, Dr. Noelle, Dr. Hirose, and main fellows that were a part of this research case.

We have never treated Zayne any different than a typical kid. He recently gained a new title of big brother! In September 2022, his sister was born to this world by the same doctors that cared for him. He loves his sister so much and this could not have been possible for all of us as a family if it wasn't for the incredible UC Davis Fetal Care Team. connexions

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special feature

Twin-Twin Twin-TwinTransfusion TransfusionSyndrome: Syndrome:Survivors Survivorsand and Best BestBuddies Buddies

Tyler was sitting in the kitchen one day with his daughter, Zoey, when she proclaimed, Tylerhungry.” was sitting in the kitchen one day with his daughter, Zoey, when she proclaimed, “We’re “We’re hungry.”

He looked at Zoey, sitting alone, and asked, “Who’s we?”

He looked at Zoey, sitting alone, and asked, “Who’s we?”

Zoey was referring to her twin sister, Kenna, who wasn’t in the room. The two are nearly Zoey was referring to her twinoutfits sister,and Kenna, in theconstantly. room. The two nearly inseparable, dress in matching playwho withwasn’t each other Zoeyare figured inseparable, dress in matching if she was hungry, Kenna was too. outfits and play with each other constantly. Zoey figured if she was hungry, Kenna was too.

The twins’ extremely tight bond is somewhat ironic because before they were born their close The twins’threatened extremely their tight health bond isand somewhat ironic because before they were born their close connection even their lives. connection threatened their health and even their lives.

Getting a diagnosis Getting a diagnosis Tyler and Kendal found out eight weeks into Kendal’s pregnancy that

Kendal started having weekly ultrasounds to monitor the twins.

Kendal having weekly ultrasounds monitor the twins.

Kendal found outwere eightecstatic, weeks into pregnancy weeks,started Kendal’s stomach started to swell,toand she got very theyTyler wereand having twins.

They butKendal’s also recognized it thatAt 16 At 16 weeks, Kendal’s stomach started to swell, and she got very they were having twins.more They complicated. were ecstatic,That but also recognized and uncomfortable.

She went to see her doctor and could make the pregnancy quickly became it lethargic lethargic andtwins uncomfortable.

She went to see hertransfusion doctor and couldAt make pregnancy more complicated. quickly becamethat’s when the were diagnosed with twin-twin a reality. theirthe 12-week appointment, they foundThat out their twins that’s when the twins were diagnosed with twin-twin transfusion a reality.

At their 12-week appointment, they found out their twins syndrome, or TTTS. TTTS is a serious condition in which twins’ were identical and that there was an imbalance of fluid between syndrome, or TTTS. TTTS is a serious condition in which twins’ were identical and that there was an imbalance of fluid between blood vessels form abnormal connections that can lead to uneven them. There was also no membrane between them, so Zoey and blood vessels form abnormal connections that can lead to uneven them.

There was also no membrane between them, so Zoey and blood flow and circulation. This can cause early delivery and other Kenna were sharing a placenta, which can create complications. blood flow and circulation. This can cause early delivery and other Kenna were sharing a placenta, which can create complications. serious complications. serious complications.

Kendal and Tyler’s lives changed quickly and moved rapidly after that moment. Their doctors referred them to the Colorado Fetal Care Center, and they were here within an hour and a half. The fetal care team assessed the babies’ and Kendal’s health, and Tyler and Kendal met with all the providers who would be involved in their care. The team answered all their questions and discussed care options. With their guidance, Kendal and Tyler decided fetoscopic laser surgery was the best option to save their twins. The care team scheduled Kendal’s surgery for just two days later.

Zoey and Kenna were born in early January — about two months early and almost exactly two years after their big brother. Their parents were excited and relieved, but still uncertain because the effects of TTTS aren’t clear right away.

In the first few days of life, however, Colorado Fetal Care Center experts assured Kendal and Tyler their girls had avoided the most serious complications.

“After the first 48 hours, I was relieved that the girls would be fine, and we had the best care in the world,” Kendal says. “We got great encouragement from our doctors. They just needed to grow and get strong.”

They’ve been getting bigger and stronger ever since. The twins spent 10 weeks in Children’s Colorado’s Level IV neonatal intensive care unit to grow, gain strength and learn how to breathe and feed on their own.

“They cared about us and our girls and that mattered a lot,” Tyler says of the care team. “Being around people who can give you as much certainty as possible was key.”

TTTS surgery at the Colorado Fetal Care Center

At 5, Zoey and Kenna have no health concerns and you would never know what they went through before and at birth. They’re full of energy and busy exploring the world together — and ordering two of every snack.

The goal of fetal surgery for TTTS is to seal off the abnormal connections between twins with a laser and restore normal blood flow and circulation so they can continue developing at a healthy rate inside the womb. Accuracy and speed are of the utmost importance. The faster the surgery, the higher the twins’ survival rate and the better their health outcomes. Fortunately, Henry Galan, MD, fetal surgeon and maternal fetal medicine specialist, is one of the fastest and most accurate fetal surgeons in the country.

Dr. Galan spent many hours planning the surgery and mapping the connections he would close — and spent only a few minutes closing those connections during surgery. That speed and precision are a big reason why Kenna and Zoey are happily playing together today.

Managing a complicated pregnancy After surgery, Kendal saw their care team once per week to make sure the twins were developing well, which they were.

At 26 weeks, she checked into the fetal care center so the team could monitor them more closely for the rest of her pregnancy.

On Christmas Eve, Kendal’s water broke. Her team was prepared for this, but knew the longer they could delay birth, the better it would be for the twins. They gave Kendal medication, and she was able to remain pregnant for 10 more days.

For more information about the Colorado Fetal Care Center, please visit childrenscolorado.org/Fetal-Care.

© Children’s Hospital Colorado 2023 All rights reserved. Children’s Hospital Colorado complies with applicable Federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex. • ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-720-777-1234. • CHÚ Ý: Nếu bạn nói Tiếng Việt, có các dịch vụ hỗ trợ ngôn ngữ miễn phí dành cho bạn. Gọi số 1-720-777-1234.

CFCC-1104394C-2023-02

At Katie’s 20-week ultrasound the doctors saw something unexpected.

Myelomeningocele. They told Katie and her husband Kyle that their son Liam may have a poor quality of life as a result of the condition. That’s when the family came to the Colorado Fetal Care Center.

Here, the team saw something different: a little boy and a family they could help.

And now, Liam is stronger than his parents ever imagined.

At the Colorado Fetal Care Center, we care for kids like Liam across the entirety of their journey, and families have access to a full spectrum of treatment: maternal, perinatal, neonatal and pediatric subspecialty care for any condition.

Care from Before Birth to Delivery and Beyond Perinatal Medicine Comprehensive perinatal testing and counseling for families managing high-risk pregnancies

Maternal fetal medicine Fetal cardiology Fetal treatment and surgery Labor and delivery

Neonatal Care Advanced care with the capability to treat virtually any condition affecting newborns

Cardiac ICU and Heart Institute Level IV Neonatal ICU Dedicated neonatal nurse practitioners, trained at master’s or doctorate level, provide complex and specialized care for critically ill preterm babies and assist with highrisk deliveries.

Beyond Delivery A focus on long-term quality of life through integration with top-ranked subspecialty care

Breathing Institute Neuroscience Institute Neonatal surgery expertise Digestive Health Institute Care for unexpected diagnoses, before birth and beyond To learn more, visit childrenscolorado.org/Fetal-care

© Children’s Hospital Colorado 2023 All rights reserved. Children’s Hospital Colorado complies with applicable Federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex. • ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-720-777-1234. • CHÚ Ý: Nếu bạn nói Tiếng Việt, có các dịch vụ hỗ trợ ngôn ngữ miễn phí dành cho bạn. Gọi số 1-720-777-1234. CFCC-1104394D-2023-02

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O H S U F E TA L C A R E P R O G R A M

One space. One plan.

One team.

When you come to the Fetal Care Program at Oregon Health & Science University in Portland, you’ll find: •

The only place in the Pacific Northwest with advanced care for you and your baby in the same space.

•

Specialists in maternal and fetal health who work with you

•

An expert team ready to help you wherever you are.

to create your care plan.

V I S I T:

o h s u . e d u / Fe t a l C a r e

Fetal Health Foundation’s popular Fetal Care Chats Fetal Care Chats are Facebook Live events hosted by co-founder Lonnie Somers to discuss new treatments, breakthroughs, and success stories.

Each episode lasts about an hour and allows time for viewers to ask questions via the chat box.

Guests include experts from our Stewardship Partner Fetal Care Centers around the country.

From time to time, patient families join in to share their inspiring experiences.

In case you missed past episodes, you can find them all on the Foundation’s YouTube channel, or in the Video section of the Foundation’s Facebook page.

Do you have a topic you would you like to hear about? Let us know! Send a message on our Facebook page. Like and follow us to get the details, and never miss an update!

follow us on Facebook! connexions

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When diagnosed with a fetal syndrome, one of the first things curious parents do is seek information. When the mind is filled with fear and doubt, it’s only natural to want to learn everything possible about the syndrome, the treatment, and the prognosis.

Knowing where to find reliable, accurate information can be tricky.

The internet is great for so many things, but how can you tell if what you’re reading is credible?

Count on the Foundation's site When the Fetal Health Foundation started in 2006, it was a group of parents who had experienced a fetal syndrome that got things off the ground. At the time, there was an extreme lack of accessible material, which drove their desire to offer such a resource. Even though it is a parent-founded, it is directed by a board of physicians and nurses who are educated and experienced in maternal-fetal medicine and pediatrics.

The Foundation also works with top-tier fetal centers across the country. From coast to coast, these partners provide the Foundation with the latest in diagnostics, treatments and patient stories 26

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photo courtesy of mart production via pexels

information you can trust, for a lifetime

by erika k. wolf

that demonstrate how capable the doctors and nurses are at caring for you and your baby(ies).

All of the content offered has been provided or reviewed by experts who are knowledgeable in the field of fetal health. You can trust it.

The information is also updated regularly, as new treatments are discovered and procedures are tested and approved. The partnership with the Fetal Therapy Think Tank allows the opportunity to help advance the world of fetal therapy. Cutting edge information from the FTTT allows a window into tomorrow’s care of fetal syndromes.

What to look for Under the tab “Fetal Syndromes”, get the facts about your diagnosis, as well as additional resources.

The “Stories” present actual patient outcomes that can help offer hope in a successful pregnancy and delivery.

On the “Home” page, meet the Steward Partners and search for a treatment center near you.

Check out “About Us” to learn more about the founders’ story, see the medical board of directors, and understand the mission.

What if I can’t find it on the site?

If there is something you would like to see on the website, please reach out. The Foundation always welcomes new ideas and wants to be the best resource possible.

When searching the web, the first step to verifying a website’s authenticity is to check the source. Look for information from a hospital, a university, or other credible organization like the National Institute of Health. Make sure there are no misspellings in the URL (web address), and check for a site seal that indicates the site is secure.

Next, look for an author with credentials that add up to being qualified to provide the information you need.

Check the date. Old information may not be incorrect per se, but treatments change, breakthroughs happen, and more and more success stories become available.

Try to find recent data to help you make informed decisions.

Still not sure? Run it by your doctor. Show the site or article to someone on your care team that you trust. Getting a second opinion can be very reassuring.

ABOUT THE EVENT

The Great Candy Run is celebrating its 20th annual event, all in support of the Fetal Health Foundation!

Come out or stay in, either way, we hope you'll join us for another GREAT CANDY RUN! Others have tried to replicate it, but none are as sweet as this family-friendly event. Whether you're 9 or 99, across the globe or right here in Denver --- it's time to get your SWEET ON!

REGISTER

DONATE

VOLUNTEER

20th

anniversary

photo courtesy of CHEO Media House

special feature

fetal therapy offers hope for patients with rare genetic disorders toddler thrives with same disease that ended siblings' lives by jess berthold special editorial submitted by friends steward partner, UCSF Benioff Children’s Hospitals 28

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When Zahid and Sobia Bashir discovered their fetus had the same genetic disease that took the lives of two of their young children, they didn’t hesitate to sign up for a promising but experimental new therapy.

“I found out (the therapy) was a possibility and I was kind of in shock; I couldn’t believe it,” said Zahid Basir. “I only really started believing it when meetings were being set up to move it forward.”

The disease, infantile-onset Pompe, is one of several rare lysosomal storage disorders that can severely damage major organs before birth. Babies born with Pompe typically have enlarged hearts and die within two years if untreated.

Pompe disease is seen in less than 1 in 100,000 live births, and is caused by mutations in a gene that makes acid alpha-glucosidase, an enzyme that breaks down glycogen. Without it or with limited amounts, glycogen accumulates dangerously in the body. After delivery, treatment to replace the enzyme is available, but the disease still often results in very low muscle tone, ventilator dependency and death.

Tippi MacKenzie, MD, a pediatric surgeon at UCSF Benioff Children’s Hospitals, suspected the enzyme replacement therapy might be more effective if given in utero when it could cross the blood-brain barrier. She tried treating mice with one of these disorders – successfully – then

gained fast-track approval from the Food and Drug Administration (FDA) for a clinical trial in 10 humans. Not long after, she was contacted by the doctor of an eligible first patient.

Unfortunately, it was late 2020, the height of the COVID-19 pandemic. The patient was in Canada and unable to travel back and forth to UCSF for treatments.

So MacKenzie, co-director of UCSF’s Center for Maternal-Fetal Precision Medicine and director of the Eli and Edythe Broad Center of Regeneration Medicine and Stem Cell Research, did what UCSF faculty do best: she collaborated.

“We shared our treatment protocol with the doctors in Canada, and they got local approval to proceed with the treatment,” MacKenzie said.

“Together with Pompe experts at Duke University, we all met by video every week to discuss care for the mother and fetus throughout the pregnancy.”

beyond pompe

Ayla received six prenatal enzyme replacement treatments at The Ottawa Hospital and was born at term. She is now receiving postnatal enzyme therapy at CHEO, a pediatric hospital and research center in Ottawa, and

“Ayla is our little toddler, toddling around,” said Zahid Bashir of his now 16-month-old daughter. “We didn’t know if she’d be able to walk, to talk, to eat, to laugh. As she hits each of these milestones, we continue to be amazed at her progress. We are quite aware that she’s a miracle.” is doing well at 16 months old: her cardiac and motor function are normal and she is meeting developmental milestones.

2, 4a, 6, and 7, Gaucher disease types 2 and 3, and Wolman disease.

“The specific thing with infantileonset Pompe is that heart disease typically starts in utero,” said MacKenzie. “So, with this patient, we were able to see the improvement in the lack of development of heart disease in the treated fetus, compared to a sibling who was also diagnosed before birth and who developed severe thickening of the heart muscle,” she said.

“These are such devastating diseases,” said Paul Harmatz, MD, a pediatric gastroenterologist who cares for patients with lysosomal storage diseases at UCSF Benioff Children’s Hospital Oakland. “Just being alive with normal mobility and development in a patient with severe infantile-onset Pompe disease is better than we usually see, so the results of this prenatal therapy are quite remarkable.”

Infantile-onset Pompe is just one of eight lysosomal storage diseases that UCSF has received FDA approval to treat with enzyme replacement therapy in utero for its Phase 1 clinical trial. The other diseases are Mucopolysaccharidosis types 1,

Though Ayla was not treated as part of the clinical trial, researchers hope her success and the publication of her case study in the New England Journal of Medicine will increase awareness of the trial among parents at known risk of passing on these

photo courtesy of Maurice Ramirez for UCSF

"This is an important step toward more curative therapies that could be given prenatally – like gene therapy and gene editing."

Tippi MacKenzie, MD Pediatric and Fetal Surgeon, UCSF Benioff Children’s Hospitals connexions

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"The people at UCSF – it’s like a family.”

Mya Queen, patient + mother

New Hope for Mothers Everywhere: Mya Queen, the first patient in Dr. Tippi MacKenzie’s clinical trial for in-utero treatment of lysosomal storage diseases, receives an ultrasound as part of the prenatal therapy for her fetus with Hunter Syndrome. Mya gave birth in late October, and she and her baby are doing well. photo courtesy of Maurice Ramirez for UCSF

diseases and the physicians who treat them.

So far, two patients with lysosomal diseases have been enrolled in the UCSF clinical trial and undergone prenatal therapy. One, who has Mucopolysaccharidosis type 2, or Hunter syndrome, was born in late October after a series of treatments at UCSF Benioff Children’s Hospital San Francisco.

Mother and baby are doing well.

“At first, I was nervous; I don’t like doctors or hospitals. But Dr. MacKenzie is great,” said Mya Queen, the baby’s mother.

“The people at UCSF – it’s like a family.”

moving the treatment window

Patients with lysosomal storage diseases must receive intravenous enzyme infusions every few weeks for their entire lives. The hope is that 30

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this could change, however, as research progresses, said MacKenzie, who holds a Benioff UCSF Professorship in Children’s Health and a John G. Bowes Distinguished Professorship in Stem Cell and Tissue Biology, and was recently elected to the National Academy of Medicine.

“The innovation here is that we are starting the treatment before birth because we know that the organ damage starts before birth,” she said. “This is an important step toward more curative therapies that could be given prenatally – like gene therapy and gene editing.”

This work also continues to expand the number and type of rare genetic diseases that can be treated prenatally, MacKenzie added.

“As new treatments become available for children with genetic conditions, we are developing protocols to apply before birth,”

said MacKenzie. “I think of this as another step in expanding the repertoire of fetal therapy to treat genetic diseases that, while individually rare, are a large percentage of congenital anomalies.”

It’s no accident that MacKenzie’s project and trial bloomed at UCSF, where Michael Harrison, MD, performed the first successful open surgery on a child in the womb to correct a lifethreatening birth defect in 1981, thus pioneering the field of fetal surgery.

“Mike Harrison was a personal inspiration to me when I was a medical student and continues to be a giant walking among us,” said MacKenzie. “It’s thrilling to continue what he started with this research, which is an important step in the evolution of fetal therapy, expanding from surgery for anatomic conditions to medical therapies for genetic conditions.”

pioneers in fetal therapy Fetal surgery has it roots in UCSF. In 1981, Michael Harrison, MD (left), performed the first successful open surgery on a fetus to correct a life-threatening birth defect.

The right care.

The right place.

A WORLD LEADER IN FETAL TREATMENT FOR OVER FOUR DECADES • Home to the world’s first fetal surgery • More experience in fetal surgery than any other institution • Nearly 50 specialists in fetal diagnosis and treatment

photo courtesy of Maurice Ramirez for UCSF

trial still enrolling

• The most advanced, innovative treatments for complex and rare conditions • A seamless patient experience, from referral to follow-up care (800) 793-3887 ucsfbenioffchildrens.org/fetaltreatment

Dr. MacKenzie’s clinical trial is still enrolling patients.

To enroll, or to refer a patient, please contact fetaltreatmentcenter@ucsf.edu or 1-800-RX-FETUS. To learn how the treatment works, visit https://fetus.ucsf.edu/in-utero-enzymereplacement-therapy/. connexions

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photo courtesy of Jep Gambardella via pexels.com

au pair care:

an affordable childcare option by michelle somers

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You’re on your way to welcoming your newest addition, but as the due date approaches, the urgency to complete the preparedness checklist grows. Nursery – check, car seat – check, birth plan – check, baby names – in progress, maternity leave – scheduled…

But for single parents and dual income families, there may be one looming area of concern… child care. The questions abound from what type of care, when will it begin, to how are we going to be able to afford it?

Whether it’s your first child, your second or more, this may be the most significant emotional and financial commitment you make for this child until college (or at 32

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least until club sports enter the picture).

Childcare --- what choice do you have?

As a new mom-to-be, I was overwhelmed with the search for a safe, comfortable, nurturing environment that was also affordable and had openings for two infants. I naively thought everyone would want my two amazing babies and thought I would be in control of the final decision between an in-home day care, a day care center, or some other perfect scenario. After phone calls, emails, interviews, and site visits, I quickly learned that infant spots are hard to find and that they come at a premium. Suddenly, my

“choices” were becoming more and more limited. Around that same time, my husband met another twin parent that introduced him to the wonderful world of au pair care.

When he first mentioned it to me, my immediate reaction was that’s not for us, we can’t afford a live-in nanny. I was so frustrated with the road I had been on, I conceded to keep an open mind and learn more about it. We learned that an au pair is not a nanny, per se, and the cost of participating in an au pair care program was super reasonable when comparing it to the cost of a more traditional day care setting.

So, what is an au pair?

An au pair is an 18–26-year-old

international student seeking a cultural learning experience in the United States in exchange for providing childcare for their host family. They are required to have a minimum of 200 hours of childcare experience and undergo additional training before entering the home of the host family. In the United States, the au pair program is regulated by the State Department, and students travel on a one-year cultural exchange visa. The State Department mandates that au pairs cannot provide child care for more than 10 hours per day, or a total of 45 hours per week.

In exchange for childcare, the host family provides the au pair a private room, meals, and pays him/her a weekly stipend.

Additionally, for the host family, there is an educational fee of up to $500 for the au pair to earn up to 6 credit hours while in country, and a program fee to the au pair agency. That is pretty much where the transactional nature of the arrangement ends.

Beyond this, the hope is that the host family will welcome the au pair into their home and hearts and the au pair will come to be part of their extended family.

What is the selection process?

As with anything, there are no guarantees of this perfectly bonded relationship, but families and au pairs undergo a thorough application process that includes background checks, references, personal questionnaires, and all of the things you can imagine. Personal interviews between the family and the au pair are critical. Be honest and upfront about what you are looking for, your expectations, and personalities that are in your home. This person is not only

"

"

I was so happy to extend my 12-month program and join a 2nd family. I was proud to be an integral part of getting the girls potty-trained! I’m even more fulfilled to have been able to watch, from my home in Germany, the girls grow up. They are now the same age I was when I cared for them!

German Au Pair, Loreen

going to be taking care of your child(ren), but will be living in your home, eating meals with you, etc.

Once a match is made, the au pair agency finalizes the visa application, arranges travel, and so on.

What is it like having an au pair in your home?

Having an au pair in your home can be an enriching experience.

Learning their language, foods and customs truly does open up a whole new world. The exposure to a foreign language and culture, and the potential lifelong bond that is created, is an amazing opportunity.

One day I was in the kitchen making dinner and the plastic letters on the fridge spelled out a seemingly nonsensical word. Our daughter came over, pointed to it and said “flower”. She repeated this several times as if she were reading the word. After a few minutes, I realized the letters spelled "Blumen", the German word for flower! They learned German nursery rhymes and songs and loved to repeat them to everyone who would listen. This developed into a lifelong passion for the German language and culture, including earning a bi-literacy certification in high school.

"

The au pair may spend off-duty time with your family or they may

meet up with other au pairs in the area and explore on their own.

Celebrating birthdays and holidays together can also be a wonderful experience and an opportunity to share customs and traditions. If their family or friends are able to visit during their stay, this helps alleviate the homesickness and provides them with an opportunity to share even more about their home life and experiences.

Au pair care certainly isn’t a perfect solution for everyone, but it can be a very rewarding, affordable solution to some families' childcare challenges!

"

Ashley + Aspen with au pairs

I am glad that we had au pairs instead of being dumped at a day care center. It offered me cultural experiences I wouldn’t otherwise have had. I am glad to have formed lifelong relationships with some of my au pairs; we got to visit them in their home countries a few years ago and meet their children!

Michelle's daughter, Aspen connexions

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photo courtesy of karolina grabowska via pexels.com

special feature

developing new treatments for allo-antibody driven diseases by katie abouzahr, m.d.

special editorial submitted by champion steward partner, janssen 34

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Globally, autoantibody-driven diseases represent an immense unmet patient need. There are more than 80 auto- and alloantibody driven conditions,1-4 and most have few or no safe, effective, and approved therapies. Autoantibody diseases are driven by pathogenic antibodies - autoantibodies that are made by one’s own body and attack important organs and tissues, resulting in a range of inflammatory conditions, such as systemic lupus erythematosus and myasthenia gravis. During pregnancy, the pathogenic antibodies are termed alloantibodies and can attack the developing fetus in utero resulting in severe diseases, such as hemolytic disease of the fetus and newborn (HDFN).

Critically, minority populations are more likely to experience poorer outcomes, including greater disease severity and faster progression.5 Overall, these diseases can increase the risk of serious pregnancy complications and potential disease flares.6-9 Janssen is taking an innovative development approach to treating antibody-driven diseases that occur during pregnancy to minimize and prevent negative outcomes using a pathway-

centric development strategy. A specific target of this research is HDFN. In HDFN, the parent’s immune system recognizes the fetal red blood cells as “foreign” and produces immunoglobulin G (IgG) alloantibodies which are targeted against them. These alloantibodies are transported across the placenta by FcRn, the neonatal Fc-receptor.10 Once in the fetal circulation, the IgG alloantibodies attack fetal red blood cells, causing them to break down quickly, resulting in fetal anemia.10, 11 Fetal anemia can produce hydrops – a condition in which large amounts of fluid collect in a baby's tissues and organs and can cause extensive swelling, organ damage, heart failure, or death.11,12 FcRn naturally regulates antibody levels. During pregnancy, FcRn transports IgG antibodies across the placenta from the parent’s circulation to the fetal circulation. After birth, FcRn rescues IgG antibodies from rapid destruction by pulling them out of a degradation pathway in tissue and “recycling” them back into circulation.13-15 Targeting the antibody binding site of FcRn is an attractive mechanism to investigate for the treatment of HDFN as it both reduces levels of harmful alloantibodies in the

parent’s circulation (by blocking the IgG recycling pathway) and prevents the alloantibodies from crossing to the fetal circulation (by blocking the placental transport pathway).16 This pathway strategy has potential to provide significant therapeutic benefit for patients of child-bearing potential who have IgG alloantibodymediated diseases.16 Given the complexity and variability of immune-mediated diseases and their ability to be triggered during pregnancy, people with underlying disease require proper diagnosis, medical care, and guidance during pregnancy planning throughout their pregnancy and in postpartum follow-up.6,17 To minimize risk to both the parent and infant, their pregnancy should be carefully managed by a multidisciplinary team including obstetricians, obstetric medical physicians, and, where applicable, specialists in the care of parents’ underlying diseases (such as rheumatologists).17 However, many people, especially those with racially and ethnically diverse backgrounds, often do not have access to this type of care.

continuing to prioritize antibody pathways

Current interventions for antibody-driven disorders such

New insights, research, and treatments for transplacental immune pathways are helping unlock opportunities that could help revolutionize the way we treat autoantibody diseases.

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as HDFN are suboptimal. Our pathway-centric development strategy of identifying diseases driven by a common immune pathway – such as FcRn – and then pursuing novel therapeutics that can differentially modulate that pathway, positions us to deliver best-in-class treatments for patients managing a wide range of immune-mediated diseases.

At Janssen, we have more than two decades of immunology expertise and tools to inform our approach when addressing unmet needs for rare, antibody-driven diseases, many of which have few or no treatment options. We are working to advance the next generation of rare antibody-driven disease approaches and developing novel medicines, including treatments that aim to reduce the harmful effects of (auto- or allo-) antibodies while safely maintaining immune function.

We continue to take actionable steps toward our goals of delivering transformative therapies that provide lasting remission and restore immune balance. Together, we share enthusiasm for a future where maternal-fetal immunology is transformed and potential parents can experience the high quality, healthy pregnancies and births they deserve.

Learn more about Janssen’s ongoing commitment to develop innovative medicines for maternalfetal immune-mediated diseases at janssen.com/maternal-fetalimmunology.

References: 1. Eggert M, Zettl UK, Neeck G.

Autoantibodies in autoimmune diseases.

Curr Pharm Des. 2010;16(14):1634-1643. doi:10.2174/138161210791164144 https:// pubmed.ncbi.nlm.nih.gov/20196735/

2. Ludwig RJ, Vanhoorelbeke K, Leypoldt F, et al. Mechanisms of Autoantibody-Induced Pathology. Front Immunol. 2017;8:603. doi:10.3389/fimmu.2017.00603 3. Quick MB Jen Christiansen,Miriam.

The Terrible Toll of 76 Autoimmune Diseases. Scientific American. doi:10.1038/ scientificamerican0921-31 https://www. scientificamerican.com/article/the-terribletoll-of-76-autoimmune-diseases/

4. Hayter SM, Cook MC. Updated assessment of the prevalence, spectrum and case definition of autoimmune disease.

Autoimmun Rev. 2012;11(10):754-765. doi:10.1016/j.autrev.2012.02.001

5. Health disparities and inequities impact Black and Latino Americans with autoimmune diseases, says new USC study. Keck School of Medicine of USC. Accessed November 2022. https://keck. usc.edu/health-disparities-and-inequitiesimpact-black-and-latino-americans-withautoimmune-diseases-says-new-usc-study/

6. Piccinni, M.P., Lombardelli, L., Logiodice, F. et al. How pregnancy can affect autoimmune diseases progression?. Clin Mol Allergy 14, 11 (2016). https://doi.org/10.1186/ s12948-016-0048-x 7. Tarazona-Bueno. R.E., Triana-Reyes, C.A., Aragón-Mendoza, R.L., et al. Warm antibody autoimmune hemolytic anemia and pregnancy, case report. Ginecol Obstet Mex. 2022;90(01):84-89. https://www. medigraphic.com/cgi-bin/new/resumenI. cgi?IDARTICULO=103464 8. Rheumatoid arthritis and pregnancy: Arthritis foundation. Rheumatoid Arthritis and Pregnancy | Arthritis Foundation. (n.d.). Retrieved December 16, 2022, from https://www.arthritis.org/health-wellness/ healthy-living/family-relationships/ family-planning/rheumatoid-arthritisand-pregnancy#:~:text=Women%20 who%20have%20uncontrolled%20 rheumatoid,medical%20care%20early%20 in%20life

9. Hemolytic disease of the fetus and newborn (HDFN). Hemolytic Disease of the Fetus & Newborn (HDFN): Diagnosis &

Treatment. (n.d.). Retrieved December 16, 2022, from https://www.nationwidechildrens. org/conditions/hemolytic-disease-of-thefetus-and-newborn-hdfn 10. Delaney, M., Matthews, D.C. Hemolytic disease of the fetus and newborn: managing the mother, fetus, and newborn.

Hematology Am Soc Hematol Educ Program. 2015;2015:146-151. https://doi. org/10.1182/asheducation-2015.1.146 11. Myle, A.K., Al-Khattabi, G.H. Hemolytic Disease of the Newborn: A Review of Current Trends and Prospects. Pediatric Health Med Ther. 2021;12:491-498. https:// doi.org/10.2147/PHMT.S327032

12. Dean, L. Blood Groups and Red Cell Antigens. National Center for Biotechnology Information (US); 2005.

Chapter 4, Hemolytic disease of the newborn. Available from: https://www.ncbi. nlm.nih.gov/books/NBK2266/ 13. Pyzik, M., Sand, K.M.K., Hubbard, J.J., Andersen, J.T., Sandlie, I., Blumberg, R.S. The neonatal Fc receptor (FcRn): a misnomer? Front Immunol. 2019;10:1540. https://doi.org/10.3389/fimmu.2019.01540 14. Romanowska-Próchnicka, K., FelisGiemza, A., Olesińska, M., Wojdasiewicz, P., Paradowska-Gorycka, A., Szukiewicz, D. The Role of TNF-α and Anti-TNF-α Agents during Preconception, Pregnancy, and Breastfeeding. Int J Mol Sci. 2021 Mar 13;22(6):2922. https://doi.org/10.3390/ ijms22062922.

15. Ohto, H., Denomme, G.A., Ito, S., Ishida, A., Nollet, K.E., Yasuda, H. Three non-classical mechanisms for anemic disease of the fetus and newborn, based on maternal anti-Kell, anti-Ge3, anti-M, and anti-Jra cases. Transfus Apher. Sci. 2020 Aug;59(2):. https://doi.org/10.1016/j. transci.2020.102949 16. Peter, H.H., Ochs, H.D., CunninghamRundles, C., Vinh, D.C., Kiessling, P., Greve, B., Jolles, S. Targeting FcRn for immunomodulation: Benefits, risks, and practical considerations. J Allergy Clin Immunol. 2020 Sep;146(3):479-491.e5. https://doi.org/10.1016/j.jaci.2020.07.016

17. Paizis K. Immunomodulatory drugs in pregnancy and lactation. Aust Prescr. 2019 Jun;42(3):97-101. https://doi.org/10.18773/ austprescr.2019.026.

Katie Abouzahr, M.D. is the Vice President and Portfolio Development Leader for autoantibody research at The Janssen Pharmaceutical Companies of Johnson & Johnson. She is passionate about transforming healthcare for women and addressing unmet needs in the maternal-fetal immunology space.

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The working world is different today than it was prepandemic. Working from home, hybrid schedules, job sharing, and other work arrangements were accelerated by the lockeddown days of COVID and continue to evolve. One clear result of the pandemic is the need to retrain or even completely change careers to remain employable.

Changing careers can be exhilarating, but it almost never happens without some doubts, and of course, some serious lessons. Whether you’re making a switch out of necessity, or maybe you’re taking this opportunity to fulfill a dream, we’ve got some insights that might help you look at the process in a different way. Why? Because here at the Fetal Health Foundation, most of us have had this experience and there are some things we wish we had known before getting started and navigating uncharted territories.

changing careers by erika k. wolf

Lonnie and Michelle’s stories: As a married couple, Lonnie and Michelle’s career changes have closely followed each other, as they have journeyed into business together. But they began in different roles and have had separate responsibilities within their new ventures.

Lonnie was a radio announcer in college while studying accounting. He became a CPA connexions

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photo courtesy of karolina grabowska via pexels.com

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Whether by choice or necessity, you’re not alone in learning something new.

but was quickly intrigued by venture capitalism and wanted to branch out from his corporate role.

Michelle also studied accounting and began a rewarding career in the corporate world.

It wasn’t until their twin pregnancy was diagnosed with Twin-to-Twin Transfusion Syndrome that they decided they wanted to help others in their shoes, which led to beginning a 5K race to raise funds for TTTS. Subsequently, they co-founded the Fetal Health Foundation to expand the reach to a global level.

These two endeavors, alongside their love of running, created the perfect opportunity for starting a sporting event management company. So, from one race, an annual calendar of 100 plus events was born. They now manage and plan events from coast to coast and are active in the running industry as thought leaders and mentors. And because of his experience and enjoyment of race announcing, Lonnie is broadening his scope to embark on a career in voice over acting.

announcing Lonnie + Michelle Their financial savvy, coupled with their skills that complement each other has led them to having an independent and sustained business and an everexpanding foundation to support 38

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fetal syndromes. And this year, that inaugural race will celebrate 20 years!

she’s had a variety of roles therein, including most recently serving as Executive Director.

What Lonnie wishes he knew: I wish I knew how hard it is to say “no.” Taking on too much and giving away too much of myself and my expertise has been a continuing lesson. In the beginning I said “yes” a lot because I wanted to build a solid reputation and a successful business, but I have learned at the expense of my own life-work balance that setting boundaries has to be part of that.

Over the years, Talitha has also worked alongside her husband in running a small drilling company.

She has worked with countless clients across the country and industries in freelance graphic design and marketing, and has served on various non-profit boards, building her resume with invaluable skills and volunteering whenever she could.

What Michelle wishes she knew: I wish I knew how tremendously accurate the saying "having children will change your life" really is. The TTTS journey catapulted us into a world that neither of us could have ever imagined. I am so fulfilled to have had the opportunity to help families navigate their own personal journeys with a fetal syndrome. At the same time, I am continually beyond inspired by people of all ages, abilities, and backgrounds toeing a start line or crossing a finish line.

Talitha’s story: Talitha is the designer and editor of Connexions magazine. She’s a PR and design maven who has enjoyed building successful businesses as a work-from-home mom while raising her family.

When her twin pregnancy was struck by Twin-to-Twin Transfusion Syndrome, she got connected to Lonnie and Michelle and helped co-found the Fetal Health Foundation.

She left her corporate job to stay home with her twins and help build a grass roots effort to support patients around the globe. Since those early days,

In 2022, she was presented with a rare opportunity and idea that she decided she simply couldn’t pass up: to start a spa and wellness collective from scratch in her rural, small hometown in North Carolina with her best friend. And the inspiration? The hit Netflix show Sweet Magnolias, where four childhood friends are presented with an opportunity to open up a spa in a beautiful, historic home in their small hometown.

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Magnolia Grove

Talitha + Kristen Much like the characters in the show, Talitha faced a lot of personal uncertainty while weighing her decision, such as

financial stability and how her schedule would turn upside down.

She was used to being at home doing her work, which allowed her to clean the house and prepare dinner most days, run carpool, and manage the schedule of afterschool activities and sports for her four active children.

From a business perspective, she had a lot on her plate, as well. She and her friend had to consider how this unprecedented type of business would succeed in this setting, build a brand, and gain a following. But they also began the hefty task of renovating the late 1800s home that houses this tranquil space of rejuvenation and retreat. That was totally new territory in and of itself.

After taking the huge leap, she is thrilled for the early success the business has experienced. Yoga, massage therapy, facials, creative and educational workshops, and the juice café are flowing and well received, as plans to expand offerings are underway.

What Talitha wishes she knew: Being able to be flexible and rely on my honed skill sets were what helped me navigate uncertain waters all through the years.

However, I wish I knew how difficult it would be to predict all of the initial investment costs with the startup of a brand new brick and mortar business, given today’s supply chain challenges. The inflated costs of construction materials and labor threw us for a bit of a loop. Because we pulled everything together in about ten weeks’ time, we had to get

surprisingly creative. My PR and marketing skills, along with vast networking and people skills has definitely come in handy.

Erika’s story: My PR/Marketing career started off with a boom, but years later, when my second child was born, I decided to leave the workforce --- always knowing it would be temporary --- to raise my family.

For the next eight years, I was a stay-at-home-mom who volunteered my heart out to maintain a network, sharpen skills, and contribute to meaningful projects on my own schedule.

When I decided to reenter the workforce, I had a harsh realization: companies didn’t want to hire a mom who hadn’t been getting paid for the work she was doing. That was quite a disappointment. After all, as a volunteer I learned new skills, new software programs, and became a logistics and organizational whiz.

But no matter how well my resume highlighted my skills, I couldn’t even get an interview.

It was time to face the reality: I needed to retrain. I decided to pursue my fitness passion and gained certification as a wellness coach. I teamed up with clients to help them keep their wellness goals front and center. My active lifestyle and ability to prioritize made me an ideal candidate for this role – skills I’d honed during my years as a stay-at-home-mom.

Once employed again, more opportunities began to open for

me. It seemed that leaving the paid workforce didn’t make me out of touch after all. I just needed a chance to prove it, and getting this retraining was enough to get my career rolling again. I’ve since worked in corporate marketing and even had the chance to live in Germany to study the language. I now work as the director of digital marketing for the Fetal Health Foundation, and have written my first book that will be published in June of 2023.

Honor Society Studying in Germany

Operations Mgr. What Erika wishes she knew: I wish I knew that too many companies don’t give credit to women who stay home to raise families. That was a tough pill to swallow. These days, it seems that attitudes are changing, and companies are starting to realize that they’re missing out on quality candidates when they overlook a dedicated mom.

Erika Wolf is the Director of Digital Marketing for the Fetal Health Foundation. As an author and public speaker she is passionate about transforming the healing journey of people dealing with cancer. She tackles the topics of integrative medicine and holistic therapies, women's empowerment and the importance of self-advocacy. connexions

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photo courtesy of elizabeth beckwith

by kimberlee bow

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infant loss support:

being a loving, supportive presence is worth a thousand words

O

Our ability to grieve and mourn is predicated on our ability to love. Love is powerful. Love has no beginning and no end. A baby is a beautiful example of the power of love. As witnesses to love in action, we lean into the parents-to-be and celebrate that love with them as friends and family members. When someone's world is shattered by the news that a little life will never be, it devastates to the core, and grief arises.

grief is an individual experience Grief is not solely an emotional experience, as we are not exclusively emotional beings.

Grief arises in our thoughts, behaviors, spiritual selves, and bodies, and does not look the same. It is individualized, as is the mourning process, which is when one expresses grief outside of the self. We tend to use ourselves and cultural norms as a reference to put an image of what someone who is grieving looks and acts like. While this is a natural reaction, there is a risk that we may miss the nuances and the needs of people we can support.

the question then arises --- what other contributing factors stand in our way of providing support?

One, is our own grief experiences and how we were raised. This includes, but is not limited to, our family of origin and culture.

Our families teach us much, and what we learn, we carry with us.

Our cultures impart their norms, sometimes without having to say anything explicitly. While one culture may teach us to "get over" grief as quickly as possible, another may believe that time and space are necessary for healing.

There are further implications if we dive deeper into the cultural component. Disenfranchised grief arises when people feel they incur a loss that is not or cannot be openly acknowledged, socially sanctioned, or publicly mourned (Doka, 2002). When we think about the loss of a baby, often what can happen are thoughts or beliefs that parents have not had the opportunity to get to know their baby, so what is the big deal? Or, they are accused of doing something that caused the loss. Some cultures have normalized this question and way of thinking, limiting the space that parents have to grieve and mourn the loss of their baby. As this article opened with, however, a deep love exists beyond time.

grief is uncomfortable It can be hard to be around grief and pain. Discomfort and the uncertainty of how to be present for someone shrouds our experience. Different thoughts and feelings within ourselves become activated. We can

become triggered, which clouds our words, thoughts, and actions.

So while we wish to be supportive, we do not know how to handle what we are experiencing and lose the ability to be present.

There is no need to judge when this happens. Instead, invite selfcompassion and acknowledge what is happening.

when words don't feel enough Furthermore, we often think or feel that we don't know what to say to make people we care about feel better or help in situations of loss. This is a very valid concern.

At times, words may not even feel enough. There are a couple of things that we can keep in mind.

there is no expectation that we have to know what to say. People do not always remember what you say, but they remember how you make them feel.

Sometimes just simply being there with a loving, compassionate presence and being a witness speaks much louder than words ever could, which leads to something that is intertwined with being present. We don't know how to be with our own discomfort, and we pull back when connexions

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we need to lean in. No one has ever said this is easy because it isn't, but it is worth it. Acknowledge your discomfort. Rather than fight it, remember that you can hold what you are feeling and still be present for someone else.

approaching grief with empathy Another way to think of it is as empathy and compassion versus sympathy. Sympathy comes from a place of "I feel sorry for you." Empathy draws on our own experiences of loss to acknowledge that we know what pain and loss are. That does not mean we know exactly what someone is feeling. Instead, we connect on a human level, knowing how hard a loss can be. Compassion is understanding plus action. There is a clear difference between coming from a place of sympathy which drives disconnection and pulls us away, versus coming from a place of compassion and empathy drives connection and allows us to lean in. support on a practical level If we take the time to understand our experiences and engage with parents when they lose their baby from a place of empathy and compassion, we have already made a difference. Never underestimate the value of presence! Chances are, however, many people still want to know what else they can do to support parents from a place of practicality. Consider asking what would be helpful and supportive.

There are two potentialities. One, the parents will have an answer.

Two, the parents will not know what they need. In the latter case, either offer suggestions or be a little presumptive and state that a meal will be brought or their home will be cleaned on Saturday. Often, people in grief genuinely don't know what they need. Helping them by providing concrete offerings takes the pressure off.

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Other helpful ideas include gently reminding parents that they still need to sleep, drink water, and eat well. If additional support is needed, like a support group or grief counseling, it can be helpful to do some research and make a list so that the parents don't have to do as much work.

be among the final third While no research backs up the "Rule of Thirds," experience seems to bear it out. There are a third of people who can be hurtful or harmful (whether intentionally or unintentionally), when someone is moving through their grief journey. Then there are a third of people who are neutral, who neither help nor hurt in the situation. Finally, there are a third of people who help support a grief journey through various ways, both emotional and practical. We all have the power to be the final third and walk alongside being the much-needed support.

national grief support Now I Lay Me Down to Sleep: nowilaymedowntosleep. org Postpartum Support International: www. postpartum.net/get-help/ loss-grief-in-pregnancypostpartum/

References: Doka, K. J. (2002). Disenfranchised grief: New directions, challenges and strategies for practice. Research Press.

above: baby Lavender with mom and dad, and big siblings, Jane and Benjamin

NILMDTS REACHES EVERY STATE IN THE UNITED STATES AND HAS BEEN PRESENT IN 40 COUNTRIES WORLDWIDE.

I’M NOT TELLING YOU IT’S GOING TO BE EASY. I’M TELLING YOU IT’S GOING TO BE WORTH IT. ~ Art Williams

PHOTOGRAPHER

DIGITAL RETOUCH ARTIST

Volunteer your time and talent to provide

The success of NILMDTS is dependent on the

remembrance portraits to parents

post-photography digital retouching skills of

suffering the loss of a baby.

our Digital Retouch Artists (DRA).

MEDICAL AFFILIATE PROGRAM The medical program provides medical personnel with the tools needed to capture images when a volunteer is unable to access a facility.

Find more information to start making an impact in your community!

nowilaymedowntosleep.org/volunteer

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the

great candy run foundation's flagship event turns 20 by erika k. wolf

This November, The Great Candy Run will celebrate its 20th anniversary and it’s going to be epic.

This 5K run/walk was started in 2004, and will celebrate its 20th annual the same year that the twins who inspired the race – Ashley and Aspen Somers – will celebrate their 20th birthday. how it started When Michelle’s pregnancy was diagnosed with Twin-to-Twin Transfusion Syndrome at 20 weeks gestation, the news was bleak. Medical professionals delivered little hope of saving their girls. But Michelle and husband, Lonnie, refused to accept that nothing could be done. And so, they began their mission to learn more, find options, and get treatment.

The road was long and difficult, but they found the answers for which they 44

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were looking. Hope was found in Dr. Ruben Quintero, a maternalfetal medicine specialist located in Florida – a long way from their home in Colorado. They jumped on a plane to pursue their dream of a family. They were comforted by the expertise and compassion that Dr. Quintero offered and after many exams and discussions, Michelle and the twins underwent laser ablation surgery to stop the uneven blood flow that happens between the two babies affected by TTTS. The surgery carries many risks including that one or both babies might not survive the operation.

Ashley and Aspen beat the odds.

They were both alive and well after the surgery, and it was time for Michelle and Lonnie to head home and wait for their due date – with Michelle on bed rest for the remainder of the pregnancy.

On June 17, 2003, the girls were born healthy and strong. Michelle and Lonnie were so happy, grateful, and relieved, but they couldn’t stop thinking about all the families who struggle with a diagnosis like this. They felt compelled to do something to help. As avid runners themselves, they started a 5K race to raise funds for TTTS, which has grown and flourished since.

In 2006, Michelle, Lonnie, and other parents affected by a fetal syndrome decided to elevate the awareness of fetal syndromes to a global level and established the Fetal Health Foundation. Now the race is called The Great Candy Run and is the biggest annual fundraiser for FHF. you’re invited to our sweet event!

What: The Great Candy Run’s 20th Anniversary Celebration When: Sunday, November 12, 2023 Where: Washington Park, 1700 E. Louisiana Ave., Denver 80210 Events: The Jolly Rancher Kids Fun Run, 8:40 am MT

5K Run/Walk, 9 am MT Post-race expo, music, and festivities, 9 am MT How: Register online at thegreatcandyrun.com.

Why: Because it's the sweetest finish ever!

Our premise was to create a family fun event that provides hope and funding to the Foundation, while allowing families to make sweet memories.

Aspen and Ashley are our inspiration in helping families battling a fetal anomaly, such as TTTS, so they can make thousands of memories while living their dream of having a family.

– Lonnie and Michelle Somers how can you get involved?

We’re glad you asked! There are many fun ways to participate, and you don’t have to be in Denver.

Register for the event in Denver to run or walk the 5K! Included with your registration is: * Entry into the run/walk, including a stroller division * A 20th anniversary edition Great Candy Run tech shirt * A special finisher medal, custom designed to commemorate the 20th anniversary * Free race-day photos * Sweet prizes for overall and age-group winners * Fun, candy-themed costumes

are encouraged * A celebration with family and friends including Sweet Street -complete with candy, baked goods, and more – live music, facepainting, and an entire post-race expo!

Register for the virtual event to run or walk 5K anywhere!

At home? Great! On vacation?

Perfect. Traveling for work?

Awesome! Along with your registration, you’ll get: * A 20th anniversary edition Great Candy Run tech shirt * A special finisher medal custom designed to commemorate the 20th anniversary * The satisfaction of knowing you’re helping families affected by a fetal syndrome Volunteer!

We simply cannot pull off an event of this magnitude without the amazing help of our awesome volunteers. Reach out to Michelle Somers at Michelle@fetalhope. com to share your time and talent with us. Bring your whole crew and make it a day to remember!

Sponsor the event!

Are you part of a company that enjoys giving back to the community? Sponsorships of all levels are available. Reach out to Lonnie Somers at Lonnie@ fetalhope.com to find out how your organization can get involved and make a huge difference!

Exhibit at the race-day expo!

On race day, thousands of people stroll through the expo to sample the goodies, talk with exhibitors, and enjoy the festivities. Do you want to have a booth to feature your business or organization?

Let us know! Email Lonnie Somers at Lonnie@fetalhope. com today!

See you on race day! connexions

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We Know What It Takes to Help Kids Like Lyra

When a prenatal diagnosis put Lyra’s survival in jeopardy, her parents traveled from their home in Florida to the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia (CHOP) for help.

For the past 25+ years, our center has offered specialized, cutting-edge care to over 30,000 families facing prenatally diagnosed birth defects and genetic conditions. We care

for the largest delivery volume of critically ill infants nationally in our one-of-a-kind Garbose Family Special Delivery Unit.

We know it takes special skill to support these babies and their families. Our team is made up of a dedicated group of clinicians who have devoted their careers to this purpose. This is our passion.

1-800-IN UTERO (468-8376)

fetalsurgery.chop.edu ©2023 The Children’s Hospital of Philadelphia

©2022 The Children’s Hospital of Philadelphia

Lyra was the 5,000th baby born in our Garbose Family Special Delivery Unit. We have since surpassed 6,000.

they will always be a light in your heart, and so together, we remember each baby gone too soon.

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photo courtesy of pixabay

Lavinia-Jae Anahera Marsh TTTS 12/24/20 Ela Osaj TTTS 3/15/20 Alexander Deleeuw HLHS 3/19/06 Emily TTTS/TRAP Sequence 5/15/07 Leo Jo Caruana Coleiro TTTS 1/23/21 Charli Arrowsmith HLHS 12/22/20 Sawyer Layne + Sutton Anne Roland TTTS 3/15/21 Lucianna Grace + Melana Rose Rodriguez TTTS 12/1/12 Lucas Ambrose McInerney TTTS/SIUFGR 10/03/21 Enzo Hoover Roche TTTS 5/14/20 Cole Edward Ryan Tummers TTTS 12/13/09 Baby Dagostina TRAP Sequence Celestia Rose Arnold TRAP Sequence Baby Jellett TRAP Sequence Evelyn Nicole + Eleanor Naomi Jones TRAP Sequence Piper Jayde Kessler Umbilical Cord Accident Lola Grace Mauro TRAP Sequence Aubrey Faith Allen TRAP Sequence Kallie Beth Palmer TTTS 7/29/06 Jace Niland LUTO 12/14/17 Lauren Kaneshiro TTTS 3/24/19 Cristiana Caudill ABS 7/1/18 Emily HLHS 6/28/17 Hunter Thomas + Jake Dimitrie Siebold TTTS 8/19/95 Faith Bianca Houghton TTTS 12/20/10

Your journey is beautiful.

Let us help you make the right connections.

Let's make those dreams come true. www.fetalhealthfoundation.org 48 connexions