CDH International’s featured patient of the week is CDH Survivor, Cullen Anderson. Cullen’s mom, Kirsty, had this to share about her son’s inspirational journey with CDH:
“While pregnant I was told my baby was completely healthy. I went into labor at 39.5 weeks. My baby was full term. After making his arrival the pediatric nurse noticed my son was having difficulties breathing. She tried everything before rushing him out for X-rays. 5 hours later I am told my son will not make it through the night. Heart crushing for a mom to hear. I had no idea my baby was even sick. Everything was perfect! Pediatrician comes in to tell me my son had a congenital diaphragmatic hernia. I have NEVER heard of this. He explained his diaphragm had an opening that allowed his intestines to grow upward into his left lung and was pushing on his heart. My baby was struggling. So at this point we were determined to fight alongside my new baby boy. I would not stop or accept he wasn’t coming home with me.
I still remember it like it was yesterday, June 26, 2014 at 6:30 AM, I received a call from the doctor as I was at the Ronald McDonald home. It was unusual for him to make calls to us. I was told to get into the office as soon as possible, it was a matter of life or death decision that had to be made within the next hour. I rushed over and I was told “your son will die if we do not do the surgery but there’s a great possibility that he still may not make it, only a 2% chance that he will survive.” The next 8 1/2 hours was the most scariest moment of my life and then the doctor walked out and said, “your baby did amazing we expected him to lose a lot of blood and we were ready for blood transfusions we had eight bags of blood we didn’t have to use one of them we only lost in less than a teaspoon full of blood!” I felt chills come over me as I cried tears of absolute joy! My baby was a fighter!
Coming home, my baby was just six weeks old. I expected to be in the NICU for a minimum of three months, as I was told that was the expectancy after his surgery. Every doctor in that building was in absolute shock at how great my son took to everything. He was only on the ECMO for four weeks, on dialysis for four weeks, every tube every machine every monitor was off of him at four weeks old and he was home by six weeks. Not once did he need any medication to help him cope. Of course we went to every follow up appointment and every single time we were told your baby is truly a miracle. I’m just shocked at how well he’s done with everything and he has no following issues.”
If you are interested in sharing your child’s journey with CDH, please visit https://cdhi.org/feature-your-cdh-patient for more information.