Brave Bonsie Babies: Maeve’s Story

Kelsey, her husband, Alex, and their baby, Maeve, live in Madison, Wisconsin. Maeve has a congenital heart and trisomy 21.

Kelsey shared Maeve’s courageous story with us.

“Maeve was diagnosed at her 20 week ultrasound with an AV canal defect. This means her heart had a hole in the wall connecting its chambers. Maeve’s defect was considered “complete” - meaning it affected all four chambers, creating one large common valve instead of the typical tricuspid and mitral valves. If that sounds a little mind boggling, don’t worry. I promise it did to us, too! Essentially, in a normal heart, the left side pumps blood only to the body and the right side pumps only to the lungs. In Maeve’s heart, blood could flow from the left to the right side - meaning extra blood was getting pumped into her lung arteries, making her lungs work much harder.”

Maeve after heart surgery.

Her condition required surgery once she was born, however, while in the womb, Kelsey’s body kept her safe.

“Side note: though this was all sort of unfathomable, it was unbelievably cool to know that she was perfectly safe and sound in utero. My body was doing the work her heart would do once she was earthside, protecting her from the defect. Wild!”

A few days prior to Kelsey’s due date, Maeve’s heart rate began to slow down, prompting an induction and c-section.

“I was supposed to be induced on a Monday morning, but started having contractions the Thursday prior. With Maeve’s heart condition and a Trisomy 21 diagnosis, I was having biweekly non-stress tests - and had one that day, so went in as planned. During the test, and during a contraction, Maeve’s heart rate decelerated, so my OBGYN recommended I go to the hospital for monitoring - which ended up with a recommendation that I be induced that day instead. We had some big plans for the weekend (final to-dos before baby, a date night, shopping) which we joke about now as being our first lesson in parenthood: you might have plans, but your child has other ones! I labored for about 4-5 hours - but toward the end of that time, during contractions, Maeve’s heart rate was slowing WAY down and we were told our safest plan of action was an urgent (not emergent) c section.”

Despite all the frightening medical challenges prior to delivery, the atmosphere of the labor room once Maeve was born was cheerful and celebratory.

Maeve smiling at the hospital.

“Though it was very scary leading up to it, our surgical team and my OBGYN made it feel like the happiest little birthday party in the operating room. Maeve came into a room full of laughter and happy tears and so many smiles. It was wonderful - and all the scary stuff was so so worth it.”

Prior to heart surgery, Maeve became easily tired after simple tasks, such as eating or tummy time, because her heart and lungs were working so hard.

“The most obvious symptom we saw in Maeve in the months leading up to her surgery was exhaustion. Eating was like running a baby marathon for her - one that she hadn’t trained for. Tummy time and PT exercises were the same way - she would end them breathing heavily and usually fall asleep shortly after.”

Bringing home a newborn baby is a lot of work under the best circumstances. On top of all the hurdles that new parents face, Kelsey and Alex worried about impending heart surgery.

“We were lucky in some ways because we were first time parents, so we had nothing to compare her to. We just saw her as our sleepy little lovebug. And on the other side of that, we were completely overwhelmed. We were already a new mom and a new dad, dealing with sleep schedules and diapers and “why won’t she poop?” And “Mom, is this normal?” - and heart surgery on top of that was unimaginable. We found ourselves thinking about it all the time, while burying the details and logistics in the back of our minds as much as we could. We wanted to soak up all the milestones and memories with Maeve, but were so scared of what was coming. We wanted surgery to happen as soon as possible, but we NEVER wanted it to happen at the same time.”

Maeve at a doctor's appointment in an Avocado Bonsie.

Heart surgery for Maeve would involve the following procedures:

“The fix for Maeve’s condition was a small patch that would convert her large, common valve back into two. Though her heart will always be a “repaired” heart (i.e. there will be some small holes left over where some blood will continue to flow back and forth between the chambers), it will function normally and she’ll be able to do anything and everything anyone with a normal heart can do!”

Maeve’s laughter and smile is one of Kelsey’s favorite parts about being her mom.

“One of the absolute best parts HAS to be her smile and her laughter. It’s incredible - once you see one smile or hear one laugh, you put ALL your energy into making it happen again. She’s got pretty high standards and makes us WORK for those laughs - but when she throws one your way you can’t help but feel like a celebrity.”

Kelsey and Alex have learned to believe in themselves and their intuition to be the best parents they can be for Maeve.

“Our biggest challenge so far has been learning to trust our guts when it comes to parenting. And by that, I mean literally believing in ourselves."

"There were many times we had “hunches” about something with Maeve, second guessed ourselves, and then found out we were right. There’s SO much advice out there - from parents, to friends, to bloggers, to even webmd (scary). We’ve had to learn to take it all with a grain of salt - to lean on Maeve’s doctors and specialists, to trust that our intuition can lead us in the right direction, and know that there are often many right answers - and sometimes no answers at all.”

Falling in love with Maeve was instantaneous; all her medical challenges washed away with pure joy.

“I think the biggest surprise for us was that meeting her was everything everyone promised it would be. We had a lot of question marks during my pregnancy with Maeve - from her Down syndrome diagnosis, to her heart condition - there was a lot we wouldn’t know until she arrived. We were assured by other parents of children with Down syndrome that once she was earthside, things would just click, we’d be so in love, we wouldn’t be focused on those medical aspects so much as we’d be focused on our beautiful daughter. It was hard, sometimes impossible to believe them, but the minute we saw her, the minute we heard her cry and touched her face, we knew everyone was right. Ugh. I get teary eyed just thinking of it. All the anticipation leading up to that moment and the relief and joy we felt once we were in it. It was magic.”

Maeve, four months old, in an Oliveyou Bonsie Footie.

Bonsie Skin to Skin Babywear has changed the way parents dress medically complex babies in the NICU setting. Bonsie's unique design allows doctors and nurses to easily place sensitive medical equipment on babies while keeping them warm, while also allowing for skin-to-skin contact without removing clothing. We offer a range of sizes from preemie to size 6-9 months, as well as footless options, short sleeves, and rompers to accommodate various needs.

It is a privilege to meet these remarkable NICU families and share their stories with you. Working with families, such as Alex, Kelsey, and Maevev is at the heart of everything we do at Bonsie. We hope to provide knowledge and encouragement to new families everywhere and help as many babies as we can in the process.