We received Kayden’s diagnosis of Congenital Diaphragmatic Hernia at our 20 week anatomy scan when they discovered that his diaphragm had a large hole. This hole (hernia) allowed the majority of his abdominal organs to migrate into his chest and severely compromised his lung growth. We left that appointment with little information other than it was not a common diagnosis, survival was likely 25% to 50% at best, and we were to await a referral to St. Louis in the coming weeks.
On our way home from the initial anatomy scan and diagnosis we received a call from Maternity Support, a program I had signed up for weeks earlier. The RN that I was assigned was alerted to our diagnosis immediately after our appointment. In what truly feels like a divine intervention, she had just recently attended a meeting where she learned of a colleague’s daughter’s journey with CDH. She was able to immediately connect us with her colleague who became our lifeline for information related to CDH. She connected us with multiple resources related to CDH as well as a CDH program at Johns Hopkins Children’s Hospital in St. Petersburg, Florida with a surgeon named Dr. Kays that had incredible survival rates.
We flew to FL and consulted with Dr. Kays and received a 97% chance survival (when we were previously told 25-50%). Dr. Kays had a treatment plan that focused on protecting his brain and lungs to give him the best outcome at a positive quality of life.
The founder of On Angels’ Wings is a lifelong friend and began offering OAW services immediately upon learning of our diagnosis. After our consultation we made the decision to take a leave of absence from our careers and indefinitely relocate our family to Florida to give Kayden the best chance for survival. Before we left, Michelle Cramer did maternity pictures for our family.
Things really began to change when we were able to learn more about different treatment options and connect with families that had such positive outcomes. We really dedicated ourselves to learning everything we could regarding CDH treatments to make sure we were able to fully advocate and make knowledgeable decisions for our son. This knowledge empowered us and pushed us to follow the best treatment plan for Kayden despite the many obstacles we faced to get there.
When Kayden was born he only had 21% lung volume and was only able to cry a faint whimper. We delivered in a large surgical room with 15-20 people assisting with his birth. Once he was born, he was immediately rushed into a side room full of doctors and specialist, so we were not able to hold him and watched his first few moments through a glass window. Our first meeting was a brief pause as they pushed him past my beside as they rushed him off to intensive care to be immediately placed on a ventilator.
When we relocated to Florida we knew of Kayden’s CDH and Congenital Heart Defect (CHD), but it wasn’t until his surgery at 6 days old to move his organs and repair his diaphragm that we learned about his Heterotaxy diagnosis as well. It changed the course of his treatment and how we continue to manage his care.
Kayden’s first “nursing” was via a soaked sponge that was smaller than a cotton swab rubbed on the inside of his cheeks. We were able to hold him at 14 days old. His first bottle was when he was nearly a month old and was only one teaspoon of breastmilk.
We temporarily rented a home in the area and our oldest son Kyler and Diana’s mom moved there with us. We worked remotely as we could (which honestly wasn’t much). Thankfully we didn’t have to do much back and forth except as we were preparing to come home. The hardest part of the relocation was ensuring that it was a positive as possible of an experience for our 3-year-old.
After 78 days in intensive care, Kayden was released to our temporary Florida home. Thankfully, nine days later we were finally able to return to our home in Missouri with both of our children.
Upon our return home and at least annually ever since, On Angels’ Wings has provided free photo sessions and support to our family. When you are faced with a journey that is uncertain for your child and your family, having an organization that allows you to focus on the beautiful moments of the in-between is such a blessing. OAW has been there to capture all of our family’s milestones and special moments, which has been invaluable gift that we will forever cherish.
Kayden’s diagnosis caused a major shift in how we do life. While there have certainly been many challenges along the way, in many ways it has made a positive impact on our lives. Getting to be Kayden’s parents has provided us an opportunity for growth in so many ways; it is such a honor to be his advocate and to love him. Kyler has learned to be accepting of other’s differences without question and the importance of loving and protecting one another. For Kayden, he does not know a life without CDH and Heterotaxy. He finds joy even when faced with struggles and challenges; it’s truly inspiring.
Kayden is doing life at his own pace and he is loving every minute of it! He works hard and is making progress every day. He still has some hurdles to overcome, so there will likely be more challenges ahead, but we will face them together, if and when they come.
We wish for Kayden to always know his strength and his potential. To be inclusive and kind. To dream big and to be successful to the best of his abilities. For him to feel accepted and loved by those important to him, and to feel comfortable expressing it in return.
By Kennon & Diana Ellison
Parents to Kayden
Congenital Diaphragmatic Hernia, Congenital Heart Defect, Heterotaxy
