Noah's Story - Congenital Diaphragmatic Hernia (CDH)

What a surprise to find out I was pregnant with my third child at 42! Having a wonderful step daughter age 20, a girl 13, and a boy age 12, I was more than happy, but had always felt my family was not complete! I was excited and nervous! As customary with all older moms, there was additional testing. Living in a small town in Kentucky, we had to travel 2 hours for my 20 week ultrasound to a diagnostic center that had more advanced imaging. It was just me and Kirsten, my 13 year old. It was a girl’s trip to find out if we would be welcoming a baby brother or sister. It was clear from the ultrasound tech’s behavior that something was wrong. The doctor came in with the devastating diagnosis of Congenital Diaphragmatic Hernia for our baby boy. My head was spinning. I was trying to stay strong for my daughter’s sake. The doctor then pressured me into having an amniocentesis. He said we NEEDED to know if there were any other issues, so that we could plan appropriate medical care. He literally took me in to another room and did the test right then and there! I was trying to control my crying, and Kirsten was very brave and supportive standing by my side holding my hand. Later, I discovered that the amnio was not necessary, and the “appropriate medical care” was code for if there were additional issues that I would probably need to terminate. NEVER! I would fight till the end for my baby boy!

The next leg of our journey would take us to Cincinnati Children’s Hospital for an entire day of testing. This time my mother was with me for support while my husband stayed at home with the other kids. After all the testing was complete, we met a large group of doctors in a conference room to hear their findings. The news was grim! They gave Noah only a 10 to 15 percent chance of survival. They spoke to us about termination, comfort care, or exit to ECMO upon delivery. I cried and cried a lot! Then the fog lifted, and I became a mom on a mission. There must be hope out there for my baby boy! Thank God for the internet! It became my lifeline. Day and night all I did was research. At one point when speaking to our health insurance provider, she asked me if I had a medical background! When I asked why, she said she had never talked to anyone who had so much specific medical knowledge except medical professionals! 

Then one day everything changed! I found hope! I stumbled onto a page called Kays’ Kids. It was a web page created by the parents of CDH kids who had been treated by Dr. David Kays. At first, I couldn’t believe my eyes. I knew that the national statistics for survival were only 50%, but they were saying that Dr. Kays’ patient survival rate was a little over 90 percent!!! And that many of the babies he had saved were in the very severe category just like my Noah! I was in Kentucky working full time with 2 kids in middle school, and Dr. Kays was at Shands Hospital in Gainesville, FL 14 hours away. That did not deter me! I called right away and to my disbelief I was able to speak directly to Dr. Kays. He had a kind voice as he reassured me that there was indeed hope for my baby. We made an appointment for a consultation, but I already knew that there was no other doctor for us!

We found house sitters, pet sitters, and lawn care. We took our kids out of school to home school. My husband was on disability, and I was very fortunate to work for family that provided me a paid leave of absence. Noah was due in late May. We relocated to Gainesville in late April.

The big day was finally here! Noah was to be induced on May 25th just one day before my husband’s birthday. Labor was going pretty smoothly until…I knew something was wrong! Noah’s heart rate was dropping, and I was hemorrhaging. I was rushed into surgery for an emergency C-section. Waking up from anesthesia I have never been so terrified in my life! All I wanted was to see my baby! My husband was the first to see him and was so surprised that he heard a little cry. He was placed immediately on the ventilator, and it would be the last cry anyone would hear for a very long time.

On his second day of life, he was put on the lifesaving ECMO machine. He was on ECMO for 11 days. During that time, he suffered two brain bleeds. Due to the brain bleeds, Noah had to be removed from ECMO. On June 6th at noon, they removed Noah from ECMO and took him into surgery at 2pm to repair his diaphragm. Dr. Kays discovered that he only had 10% of his diaphragm and that his stomach, spleen, intestines, and a large portion of his liver were all up in his chest cavity. It was repaired with a Gortex patch. During his recovery, his kidneys begun to fail, but through prayer and the expert care or Dr. Kays, they began functioning properly again. It was touch and go every day. I prayed, sang, read to him and held his tiny feet and head in my hands, as that was the only parts of him I was allowed to touch. The day he turned one month old, he was successfully extubated. I heard him cry for the very first time; it was the sweetest music I have ever heard. It would be three more days until I was able to hold my boy for the very first time.

After 81 long days in the hospital, Noah was finally able to go home. He was on oxygen for 11 months, had surgery to correct relux at 9 months, heart surgery to repair an open PDA at 10 months, and lots of oral meds for the first year. 

Today Noah is a happy, thriving 6 year old in Kindergarten! He has no lasting health issues aside from being a bit under weight at 44 lbs. He is very smart, loves to play sports, and video games. He has changed all of our lives for the better, and I know touched so many other lives. I have no doubt that God has big plans for my litter warrior. The best is yet to come!