Featured cherub of the week is CDH survivor Lindsey Baxter. Lindsey is the daughter of Jeff and Lisa Baxter. Lisa is CDH International’s Virginia Co-Representative. Lisa had this to share about Lindsey:
Jeff and I lived in South Carolina when we received the wonderful news we were pregnant in July of 2013. At our 20 week ultrasound we learned the gender of our baby, but also learned her heart was on the other side of her chest. After seeing a Pediatric Cardiologist, he shared her heart was not only on the other side of the her chest, but it was flipped completely backwards. The doctor went on to explain that a vein within her umbilical cord that controls the blood flow was going directly into her heart and placing her into heart failure. As the weeks went on we were diagnosed at a nearby hospital with CDH (Congenital Diaphragmatic Hernia) and was given less than a 50% chance of living. We were devastated! Jeff and I did a ton of research and discovered only a handful of hospitals that specialize in CDH babies and decided it was best for our family to relocate to Cincinnati, OH.
After several trips back and forth for testing, we learned Lindsey’s cardiac output numbers were declining and that meant 24 hour observation in the hospital at 34 weeks. The goal was to get Lindsey to 38 weeks when doctors thought she would be far enough along to be able to be delivered and have a chance to be a viable candidate for surgery.
Lindsey was delivered via C-section (at 37 weeks) by several teams of Doctors, Nurses, and specialists to include Cardiology, Pulmonary Cardiology, Genetics, and Neonatologists. She was immediately taken back to the NICU in extremely critical condition.
On day 8 of life, Lindsey was strong enough to undergo her CDH surgery to repair her diaphragm and move the organs to the location they should’ve been in. They also fixed one of her heart defects, but the location of her heart was not repaired.
Lindsey had many ups and downs while in the hospital. She had to learn how to breathe, suck, and swallow weeks after being born. Feedings were so difficult due to the organs being shifted so her reflux was awful. Lindsey was in the hospital for 64 long days. We brought her home to South Carolina on feeding tubes along with many heart medicines and a ton of Physical Therapy and Speech Therapy appointments. I had to quit my job to help my sick little baby. Within the first year she weaned off everything with the exception of Physical Therapy. Living in the NICU had its pitfalls so she was severely behind in every facet developmentally. You take for granted what it is like for a normal baby do belly time, have neck stability, roll over, sit up, pulling up to stand, and walking. After the 2nd year Lindsey was off to the races and has now caught up to every other kid her age with the exception of her weight. She finally made it onto the weight charts at a whopping 6%, but we will take it.
We learned over time to treat her just like every other kid her age, but the memories never go away. There is a lot of PTSD that comes from having a sick child. No baby shower, no ordering nursery items or clothing in advance, not holding your baby at birth, not being able to breastfeed because your baby can’t handle it, but the worst was not bringing your baby home a few days later.
We lived in a Ronald McDonald House and met around 75 other families that had one wish… and that was to bring home their sick child. We were 1 of 4 CDH families in the house and 2 of these families lost their child. Along with Lindsey’s CDH, she also had 2 other heart defects and neither of them have been recorded in medical journals. Lindsey is truly our miracle!
Fast forward five years and Lindsey is now in Kindergarten. It’s not every day you come across a teacher like hers, Mrs. Lock!
Each year our family holds a fundraiser at a local restaurant on behalf of CHERUBS to not only raise awareness of CDH, but to make a donation on behalf of our family.
Mrs. Lock showed up and surprised us all! What makes her even more special is over the Holidays, Mrs. Lock said she has everything she needs. One thing she requested was to make a donation to a charity and she choose CHERUBS.
I must say I was quite shocked and overwhelmed with emotions. Mrs. Lock and the other children in the classroom donated $165!!!
Mrs. Lock told me she LOVES her kids and I truly do believe that… she walks the walk and talks the talk!!!
No one can ever truly know this journey unless you have been on it. I did not discover CHERUBS until after we brought Lindsey home. I learned about what CHERUBS does for so many families and now feel the need to raise awareness and give any time I can back to this charity.
Warmest regards,
Lisa and Jeff Baxter
(parents of Lindsey)
