March of Dimes Boston Parents Paper March for Babies

Meet Sarah– Born at 29 Weeks

Brought to you by Boston Parents Paper and the Massachusetts March of Dimes

HEALTHY MOMS. STRONG BABIES. Every baby deserves the best possible start. We are fighting for the health of moms and babies because it makes the future brighter for us all.

MARCHOFDIMES.ORG

© 2018 March of Dimes

Rise and Shine:

How March of Dimes helps Boston morning deejay KJ Carson and family

By Susan Solomon Yem KJ CARSON IS A MORNING PERSON. He gets up early to wake up the rest of Boston on The Morning Wake Up with KJ & Kesha on iHeartRadio’s the New 97.7. KJ’s daughter, Sarah, did at least one thing early, too. Born to KJ and his wife, Regina Johnson, six years ago, Sarah was delivered by emergency C-section at 29 weeks. It was a scary time for KJ and Regina, who had a rare occurrence of HELLP, a life-threatening pregnancy complication

usually considered to be a variant of preeclampsia.

Regina was 39 when she became pregnant. Sarah is her first child, but KJ has a 22-year-old daughter, Ayana. “The doctors never expressed any concerns about my pregnancy,” Regina remarked.

“The only difficult part was the morning sickness.”

But when Regina’s enzyme levels fell to an extremely low level and her blood pressure reached the mid-200s, she and

brain hemorrhage. This is because blood vessels in the brain of premature infants are not yet fully developed. They are very fragile as a result. The blood vessels grow stronger in the last 10 weeks of pregnancy.

The primary characteristic of hydrocephalus is excessive accumulation of fluid in the KJ knew something was wrong. “She was brain. This causes an abnormal widenan hour near death before Sarah’s birth,” ing of spaces in the brain called venKJ recalls. “Sarah was about 20 minutes tricles that creates potentially harmful near death before her delivery.” pressure on the tissues of the brain.

Sarah required two surgeries right Calm and Comforted away. One involved placing a reservoir In the midst of the crisis, Regina, a to remove the excessive spinal fluid from fourth-grade teacher, felt calm and com- the brain, and the other was to put in a forted. “I was unaware of the danger my shunt to drain fluid through her body. baby and I faced,” she remembers. “I did The doctor who was the head of not feel any unease.” pediatric surgery came to meet Sarah In fact, Regina did not know just and see Regina and KJ before taking the how dire the situation was until after baby to the pediatric hospital. Regina Sarah’s birth. The cause of HELLP is is grateful for his personal concern. still unclear to many doctors, and the “We were told that had never happened syndrome can be misdiagnosed. It is so before,” she said. “We were blessed to be rare that HELLP syndrome affects only surrounded with people who wanted the 0.2 to 0.6 percent of all pregnancies. For best for Sarah.”

Regina, HELLP started with a sudden onset of extreme headaches and difHelpful Support ficulty with her sight.

Sarah was in the Neonatal Intensive The emergency C-section was Care Unit (NICU) for 104 days. According performed when doctors could not get to KJ, “We were told Sarah would have a response from Sarah in the womb. some very big challenges with learning, Sarah’s birth weight was 2 pounds, 1 speech and mobility.” ounce and she was only 13 inches long.

It was during this time that March She was born with a CAT 4 brain hemor- of Dimes began to support the family. rhage and hydrocephalus.

“A member of March of Dimes began a Infants born more than 10 weeks dialogue with Regina during a March early are at highest risk for brain bleed- of Dimes NICU Family Day visit,” KJ ing. The smaller and more premature explained. “There were days when we an infant is, the higher the risk for felt drained and devastated, but March

of Dimes connected us with families who had already experienced life in the NICU and beyond.”

Worldwide, 15 million babies are born prematurely each year. March of Dimes funds lifesaving research and supports legislation that improves care for mothers and babies. Local markets focus efforts on improving health care disparities by creating programs among communities with specific populations, including African Americans, Hispanics, Asian Pacific Islanders and Native Americans. March of Dimes-supported research has led to improved prenatal diagnosis of sickle cell anemia, the discovery of the genes for Marfan and Fragile X syndromes, and the development of the pulmonary surfactant therapy that treats respiratory distress syndrome.

The NICU Family Support Program is available in hospitals nationwide. Last year, more than 75,000 families received this care. The program educates NICU

staff about the best ways to support babies, families and each other. The organization also provides hospitals with information for the extended family as they help families cope.

Central Massachusetts Senior Development Manager Stephen M. Sycks describes the services offered in the NICU as such: “Through our NICU Family Support (NFS), we provide educational and emotional support to families during their entire stay. NFS coordinates NICU community events for families to celebrate milestones, holidays, and peerto-peer support and fellowship.”

There are many resources available to parents, including booklets and information sheets, written in both English and Spanish, and parent education classes. “March of Dimes partners with hospital staff to provide clarity and a certain level of comfort,” said Sycks.

“We’ve developed seven topics for our parent education classes, including Caring for Your Baby in the NICU, Caring for Your Family Means Caring for Yourself, and Caring for Your Baby at Home.”

March of Dimes representatives met with KJ and Regina at both hospitals as, Regina explains. “They gave us brochures, contact numbers, and a diary to help us handle the dayto-day of NICU living,” she said. “They prepared us for what to do when the baby came home. This was all vital information during that time.”

Eventually KJ, Regina and Sarah became March of Dimes Ambassadors.

As Ambassadors, they, along with their extended family, offer support and outreach as much as possible. “I give advice to people, mainly mothers, who have babies born prematurely,” says Regina.

“My family and church family donate items to the Ronald McDonald House.

We have walked in the March for Babies for the last few years.”

As March of Dimes signature event fundraiser, March for Babies supports the March of Dimes mission to improve the health of babies. “Every March for March of Dimes volunteers are often Babies participant is a leader who has parents who have experienced the chalthe power to make a huge difference lenges of premature birth. for families,” said Sycks. “The common theme among our volunteers is: so it Home at Last doesn’t happen to someone else.

After almost four months in the “The March for Babies community NICU, Sarah went home. She required bands together to fight for the health physical therapy, occupational therapy of all moms and babies. We raise funds and eventually speech therapy. Sarah’s and awareness so that we can solve even eyesight had been severely damaged the toughest problems.” early on and she had surgery on both “I am really interested in raising eyes in 2012. She is classified as develop- awareness about how to save the lives of mentally delayed in speech and physical babies and mothers, so I will continue to mobility.

“That first year that Sarah was home, we got very involved with March of Dimes,” says KJ. “It started with a donation, but then we began participating at events once Sarah could be outside for extended periods of time.”

In addition to NICU support, volunteers help to raise critical funds to help tackle the biggest health threats to moms and babies, as well as advocating for polices to protect them. “Because they know firsthand the impact of these issues they work with us toward a day when all babies are born healthy,” says Sycks.

help raise money for and with March of Dimes,” adds Regina.

This spring there are four Marches for Babies in Massachusetts: April 28 on the Cape, April 29 in Worcester, May 6 in Lowell, and May 12 in Cambridge.

Sign up at www.marchforbabies.org.

Making Progress As a baby, Sarah was a fighter, and as KJ says, she continues to fight today.

“We will never forget the day Regina and I heard Sarah tell herself, ‘get up, get up.’ She was pushing herself to stand and walk on her own,” he said.

Though issued a walker, Sarah refused to use it. She wears orthotics on both legs and started wearing eyeglasses two years ago, which has helped tremendously with her vision.

Recalling how tough it was to find a pair of New Balance sneakers for Sarah, KJ thinks it is ironic that his office at the radio station is on the same street as the New Balance building.

KJ and Regina agree, “We are proud of Sarah and her hard work. She is a shining example of all things being possible when you believe. Her infectious personality and never-ending smile are priceless.”

Sarah enjoys all types of music and loves to sing. KJ and Regina consider it a blessing to be her parents.

“My coping skills grew to a whole new level of understanding when Sarah was born,” says Regina. “I have always been a person with a strong belief and faith in God. Seeing my child struggle and fight for her life drew me closer to my God and my desire to know how to help my child to fight for her life.

“Sarah’s godmother, my closest confidant, gave me some wise advice:

feel what you feel and let it go. Do not try and analyze your feelings. Those words were life-changing for me and my situation.”

“I really have to thank my wife for her strength and courage,” says KJ. “Nearly losing both Regina and Sarah changed a lot of things in me. We always say that we wouldn’t want Sarah to be any other way, but we wouldn’t want any family to go through the intense and stressful aspects of premature birth. We are truly thankful for March of Dimes and what they do for families. It is our family’s mission to do what we can to help end premature births.”

About March of Dimes March of Dimes leads the fight for the health of all moms and babies. We support research, lead programs and provide education and advocacy so that every baby can have the best possible start. Building on a successful 80-year legacy of impact and innovation, we empower every mom and every family.

Visit marchofdimes.org or nacersano. org for more information. Visit shareyourstory.org for comfort and support.

Find us on Facebook and follow us on Instagram and Twitter.

April 30 April 29 May 7 May 12

Sandwich Scusset Beach State Reservation: 9 a.m.

Worcester Greenspace at Mercantile & Front Street: 9 a.m Merrimack Valley Heritage Farm Ice Cream & Restaurant: 9 a.m.

Cambridge North Point Park: 9 a.m.