Kaiden’s Story - Congenital Diaphragmatic Hernia (CDH)

It seems like my life can be sorted into two categories, before and after we ever heard the words Congenital Diaphragmatic Hernia. So many emotions surface as I remember so well every detail. I remember lying on the ultrasound table praying with all my might when I noticed the ultrasound technician took a few too many pictures of the same spot and then said she would see if the doctor needed any additional images. I remember whispering to my husband something was wrong as he assured me everything was okay. Finally, I asked, "something is wrong, isn't it?" She told me, "Yes, I'm sorry. Let me go ahead and get you back in a room." I remember excusing myself to the bathroom and dropping to my knees in prayer on the cold, dirty bathroom floor, pleading that whatever it was, it wasn't a big deal. 

Finally, the doctor came in after what felt like an eternity. I remember her asking if I had heard of Congenital Diaphragmatic Hernia. She explained that our scenario looked like the severe end of the spectrum, and we felt no hope at all for our baby to survive after birth. The thought of leaving the hospital without my baby made me feel like I couldn't breathe. That my milk would come in, and I would experience all the pains of childbirth only as a reminder that my baby was gone.

We went home, and I laid down and felt him kicking. His kicks hurt my heart. How could he be growing inside of me, getting bigger and stronger but yet sicker at the same time, and there was nothing I could do? No prenatal vitamin, healthy diet, or exercise could heal him. I searched the internet for information, but all I found were pictures of angels. Babies that had lost their fight. 

Based on the situation, we wanted to name our baby as soon as possible. We named him Kaiden, which means "warrior," and Jude, which means "praises." I posted on Facebook telling everyone all at the same time because I was not sure I could repeat it. 2 days after that post, several moms from the CDH community reached out to me and kept telling me of a doctor in Florida, Dr. Kays. To be honest, based on our research, he and his success rates seemed too good to be true. We were scared to be hopeful, but we called Joy and received a call back within an hour. We prayed so hard before his appointment that his liver would not be up, and he would not be as severe of a case as we were led to believe.

We set up a consultation with JHAC and found out that Kaiden was a severe case. He had a huge hole, with 35% of his liver up. He still gave us a 95% chance of survival over the 30% we had been given at our local hospital, so the decision was made. We would pack up our other 4 children and relocate to St. Petersburg at 34 weeks. 

Kaiden came 2 days early, and I've never been as relieved as when I saw Dr. Kays walk in the room. After delivering, I burst into tears so scared that there was nothing more that I could do for him. I've never been so scared in my life. The doctor that delivered him said, "look at me, you did so good. You have done everything you can for him. You have him in the very best place he could possibly be." I pleaded God would spare my son and work through Dr. Kays and his team. Due to Kaiden's severity, we had been told that he was 85% likely to go on ECMO, but he did not. He was breathing over the ventilator and fighting so hard to live. We were discharged after 42 days from JHACH with no G-tube and .1% oxygen, which he only stayed on for a month after returning home. 

After we were diagnosed, I spoke to a mom who told me that if God had told her the outcome, it wouldn't have allowed her to entirely rely on Him for the months of the unknown. God led us to JHAC and gave us the strength we needed each day to make it. Kaiden is 15 months now and thriving. He is the happiest little guy, meeting all of his milestones. You would never know what he has been through. He is my little "warrior child."

I'm so grateful to Dr. Kays and his team. I could not imagine going anywhere else. I do not believe Kaiden would be here today if we had not been led to him and his team.

"The Lord is with you mighty WARRIOR" Judges 6:12