Lifesaving work gives life to St. Joseph native's first book

Feb. 7—Amid an emotional rollercoaster for her family almost nine years ago, St. Joseph native Cristin Rogers remembers searching through countless books to find the perfect one to comfort her 18-month-old daughter Charlotte.

After months of eagerly awaiting the arrival of her new baby sister Tilly, Charlotte was confused when her sister wasn't able to come home and about why her parents had to spend so much time away at the hospital.

"Even though she was so young, she knows we're not there, she knows something's not right. Mommy's not picking her up or taking her to day care," Rogers said. "She knew that the baby was out of my tummy. But where is she?"

Wanting to comfort Charlotte through stressful times while her sister was in the hospital would be an inspiration for her to create her own story about the experience years later.

Lifesaving work from doctors and a community of people who rallied around them are the reason their daughter Tilly is alive today. Tilly's battle in the hospital and long-awaited return home would give life to Rogers' first children's book called "Grow, Baby, Grow."

"We just felt so lucky to have her home because we didn't know if she would come home," Rogers said.

'Trust that it's going to work out'

Rogers remembers looking at the demeanor on her nurse's face during a sonogram appointment and thinking something was up.

"We knew about halfway that something may not be right, but we were trying not to get overly concerned. Right? Because babies grow and change," she said.

It wasn't until 31 weeks into her pregnancy that Rogers and her husband, Sean, learned exactly what was going on with their daughter. Tilly was dealing with a rare and severe heart defect called Ebstein's anomaly. Just a few days later, Rogers was admitted to the hospital and told the baby had to be delivered.

Children's Mercy pediatric cardiologist Dr. Amanda McIntosh said the hospital usually sees only one to two cases of Ebstein's anomaly a year.

"They had told us, you know, this is not the best scenario. This child, she may not survive. She has about a 50% chance of making it if you deliver to term," Rogers said.

Despite the odds, Tilly was born nine weeks early and immediately taken to the NICU. Doctors told her parents she would need to have surgery at some point to repair her heart. For the procedure to be successful, she ideally needed to grow more, but health complications forced them to do the surgery earlier than normal to save her life.

"At the point in time when you're waiting in the waiting room and you know, you're holding your little onesie," Rogers said. "Your mind can't even grasp that this is your reality right now."

As the hours stretched in the waiting room, Rogers received an update that plan A for the surgery wasn't working. Surgeons would have to pivot to plan B. With friends and family by her side, Rogers turned to her faith in God and belief in the doctors that Tilly would make it through.

"There was a lot of, you know, praying and begging, bargaining ... and trust that it's going to work out how it's supposed to do," Rogers said. "Because of how small she was. She should have grown to have been at a point in her life to maybe be a little more sustainable to repair it ... but it worked."

Bringing a story to life

After Tilly came home from Children's Mercy — much to Charlotte's excitement — it wasn't long before Rogers knew she wanted to tell her story and author a children's book for her daughters and other families going through similar situations.

Throughout the 125-day experience with Tilly in the hospital, the word "grow" was said more than any other word. That made it fitting for Rogers to title the book "Grow, Baby, Grow."

"I think it encompasses, you know, a child just waiting and begging for their new best friend to come home, and lots of times that doesn't happen and they have to wait and they don't understand why because they're just little kids," she said.

Finding the right illustrator like Bonnie Lemaire who was able to bring their story to life wasn't easy, from the smallest details like the dandelions they saw outside the hospital to the mom's heart-shaped necklace, it meant a lot to Rogers to see everything in their lives intertwined beautifully with the book.

"I remember the first time she sent it over. I get emotional, so I cried ... I called my husband up. I was like, It's perfect," she said. "To see something that you've worked on that represents like a huge part of your life come to reality ... the timing of it all just really fit perfectly."

Rogers and Lemaire worked back and forth for nearly seven months on the concept before the story and illustrations finally came together. Outside of her husband and mom, she kept the book largely a secret from everyone else. While it was released in 2021, Rogers is just starting to get the word out.

"My husband didn't realize that I had a printed copy to give him at Christmas ... It was pretty special just to see his reaction. And he is very proud," Rogers said. "And the girls were like, 'What? We're in a book?'"

While she doesn't have any immediate plans for another book, Rogers isn't closing the door on writing something again one day when the time feels right.

Paying it back

It's easy for Rogers to get emotional when thinking back to everyone who helped them during Tilly's long hospital stay. Friends and family stepped up in whatever ways they could, from picking Charlotte up at daycare and watching her like she was their own to bringing them food. She'll never forget how much it helped them get through the ordeal.

"Having people in your corner is very important and knowing the people you can count on. That's something we don't take for granted," she said. "Everyone really just cared about her ... So, yeah, I mean, it meant the world to us."

Rogers tells Tilly, now 8 years old, to be proud of the scar that sits right over her heart. It serves as a reminder of the lifesaving work performed at Children's Mercy and the large community that rallied around her.

She's amazed at what doctors were able to accomplish at a time when Tilly's chances of survival looked dire. After everything the hospital did for them, Rogers' new book allowed her to give back. Proceeds from purchases of "Grow, Baby, Grow," go to Children's Mercy and other organizations supporting newborns with congenital heart defects.

"The cardiologist and everybody who took care of her, the nurses and everything ... without them, we know she wouldn't be here."

Children's Mercy's ability to surround Roger's family with a strong team of different specialists to help guide them through pre-natal and post-natal care was vital.

"That's one of the really exciting things I like about working here is we have all these people with a lot of expertise and we can really plan ahead for these most complex cases," McIntosh said. "We can take, you know, some really scary, stressful situations and we can have, you know, good outcomes."

Helping families get through the other side of a challenging health situation is one part of the job that McIntosh takes pride in.

"You really get to know families during the pregnancy and then you get to see them after birth, you know, and meet the babies and see that part ... it's just a really rewarding piece," she said.

Wearing bright blue T-shirts that say "Tilly's Tribe," Rogers' family often devotes time now to supporting Children's Mercy, fellow friends and other efforts for families impacted by CHD.

"It just helps us realize the importance in life, right? We do have a giving back mindset now," Rogers said. "We always try to do the things to help other people because everyone was so good to us."