On World Down Syndrome Awareness Day, meet Theodore

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Jerica and Tyler Rapp will be wearing mismatched socks and shades of yellow and blue today in celebration of World Down Syndrome Awareness Day.

But every day is an opportunity for them to celebrate their 7-month-old son, Theodore, born at Riley Hospital for Children last summer with Down syndrome and two heart defects.

Down syndrome is a condition in which a baby is born with an extra chromosome. March 21 was selected as the global awareness day to signify the uniqueness of the triplication of the 21^st chromosome.

It is the most common chromosomal condition diagnosed in the United States, occurring in about one in every 700 babies and resulting in developmental delays, intellectual challenges and some distinct facial features.

For the Rapps, the news that their first child would be born with Down syndrome came early in Jerica’s pregnancy.

As a neonatal intensive care nurse at Riley for six years, she has cared for many babies with serious birth defects, so she and her husband chose to learn through amniocentesis about any genetic disorders or other conditions their baby might have when Jerica was about 15 weeks’ pregnant.

Despite the shock of the diagnosis in utero and the emotional journey during pregnancy, Theodore has brought them more joy than they thought possible.

“We always knew we wanted him,” Jerica said. “My husband and I believe that every child is worthy, but you definitely go through a process where you almost grieve for this life that won’t be what you planned.”

Instead, she believes, it’s quite possibly better.

“There’s a lot of reframing in your mind, where you separate yourself from what you thought your life was going to be, then prepare yourself to grow into what your life will be.”

Part of the adjustment they had to make was not just their son’s genetic condition, but also the heart defects that often are present with Down syndrome babies.

The couple had planned to deliver closer to their Rockville, Indiana, home, but when they learned about Theodore’s heart defects, they knew delivering at Riley’s Maternity Tower would be the safest choice.

Theodore, who is followed by Riley cardiologist Dr. Michael Johansen, spent time in the Riley NICU and in the CVICU (cardiovascular intensive care unit) after surgery by Dr. Mark Rodefeld to repair a condition called coarctation (or narrowing) of the aorta, causing the heart to pump harder to move blood through the aorta.

The initial separation from her son after birth caused the first-time mom some distress, but knowing that he would be cared for by her colleagues in the same building gave her immense relief, she said.

“Having our child in the NICU was never anything I imagined would happen, but once we found out he was going to need NICU care and I was going to need to deliver at the maternity tower, it was a big relief to know that my peers were going to take care of him,” Jerica said.

“It’s so hard when you have that initial separation and you have to go through recovery, but I knew all of the people who were taking care of him – from the nurses to the doctors to the respiratory therapists. He was with the best possible people.”

One month ago, Theodore had another heart surgery by Dr. Rodefeld to repair atrioventricular septal defect, a hole between the chambers of the heart.

The difference after surgery has been amazing to see, Jerica said.

“We’ve seen a huge change in his personality and in his ability to do things. Before, he had the symptoms of heart failure – he would get tired easily and sleep a lot. Now, he has this big, vivacious personality, and he smiles all the time, and he giggles.”

With increased energy and support from occupational therapy, he is reaching more and more milestones, including rolling over, holding his head up and working on sitting up.

He might be behind most babies his age, but his parents are savoring every victory, no matter how small.

“One thing we’ve found is that as first-time parents we don’t have an older child to obsessively compare him to. It’s kind of nice when you realize that when your child takes longer to do things, you get to cherish and celebrate those little things more, like holding a rattle or switching hands for toys. We notice those things a lot more, so we appreciate those baby steps.”

The Rapps announced their pregnancy and Theodore’s diagnosis on social media on Down Syndrome Awareness Day last year and found a network of community support.

“This was our first chance to share him with the world,” Jerica said. “To say, this is my child, this is what he’s facing, and we’re proud of who he is.”

That announcement connected them with many people in the Down syndrome community, and they participated in the Down Syndrome Indiana Buddy Walk in Terre Haute last April before their son was even born.

Today, on World Down Syndrome Awareness Day, the Rapps will wear brightly colored mismatched socks as a nod to the notion that chromosomes look like socks, and they will visit businesses in their community that are supporting awareness efforts.

Seven months with their son has been “wild and crazy and unpredictable,” Jerica said, “but the amount of growth my husband and I have felt because of him is amazing.”

“He has opened our eyes to this whole new way of life and challenged us to be better people, more accepting people, more inclusive people. Now that we’re here and past all of the fear, I think it’s probably the best version of our life that we could have asked for.”

The Down Syndrome Program at Riley Children’s Health provides specialized and coordinated care for children with Down syndrome.