"Charlie threw him a curve ball in the operating room" - Charlie's Story
My husband and I found out we were expecting in late January, we were so thrilled so be entering into this chapter of our lives. Due to scheduling issues, were had our 20 week ultrasound at 17 weeks, we could hardly wait to find out the sex of our baby. We were very excited but also nervous about the health of our baby, it wasn’t our focus but strangely enough was always in the back of our mind. We had the ultrasound and it being our first child, didn’t notice anything unusual. We waited to see the Doctor and when she came in she said “What did the ultrasound tech tell you?”, not knowing anything was wrong we said, “That it’s a boy?”. She responded with, “it looks like he has a diaphragmatic hernia but we need to send you to a maternal fetal Doctor to verify”. We asked, “Is it serious” she replied with it can be “very serious and I wouldn’t recommend googling it”. Of course we left the office, googled it and were devastated, we went to MFM Doctor the same day and received confirmation that it was indeed a Diaphragmatic Hernia. Our Doctor at the time was not supportive and gave us all of her experiences with CDH (not positive). I had an Amniocentesis and was told that if it came back with any red flags that the recommendation was to terminate. The next 7 days were the longest of our life, we went on vacation to the beach but of course all we did was worry and wait for a call from the Doctor. We finally heard from my OB and everything was clear in the amnio so it seems like Charlie had CDH with no additional issues. We were thrilled with this news but our MFM Doctor still seemed to think we should consider termination, if we didn’t she recommended CHOP, we mentioned Gainesville and she had never heard of Dr. Kays. Several days prior, I had googled CDH and found Dr. Kays, he looked like the best choice but could Durham and I realistically relocate to Gainesville for 2-3 months? It wasn’t likely so we explored other options at the time, while spending an entire day at Vanderbilt meeting with their MFM, Pediatric Surgeon and Neonatologist. Vanderbilt sees a handful of CDH babies a year and it would have been much easier to stay here but they don’t have the results that Dr. Kays does and that was extremely clear after we visited Gainesville. Thankfully, a mutual friend from Birmingham, whose son had been one of Dr. Kays patients convinced us to at least go to Gainesville and meet Dr. Kays before making our final decision. We are still so thankful for the Riches and their encouragement!
The next 4 months were very long, at 26 weeks we flew to Gainesville, met Dr. Kays and Joy and were given the best news we had heard since the diagnosis. Charlie’s liver remained down, there was a 25% chance he would need ECMO but regardless there was a 90% chance that we would bring him home breathing on his own. Everyone was extremely confident and comfortable with the CDH diagnosis , not to mention there was a free apartment for us to stay in, which made this a no brainer! Charlie was going to be born a Florida Gator, no questions asked.
I flew down at 37 weeks and was induced at 39 weeks, after being in labor for 24 hours Charlie came into this world via c-section. We were anxious to start the process and get him well so my “birth plan” quickly went out the window. Charlie did extremely well the first 4 days of life, he had his repair on day 4. It was during his surgery when he got extremely sick, apparently his good lung collapsed and they nearly lost him. He was missing 60% of his diaphragm and had stomach, spleen, intestines and kidneys in his chest…his lungs were pretty decent size so Charlie threw him a curve ball in the operating room. Dr. Kays was not happy after the surgery and had told us that it was extremely likely he would be put on ECMO, he slept by his bedside that night. Charlie pulled through and thankfully didn’t need ECMO but his lungs took a little longer catch on than the typical “Moderate” CDH baby. He spent 54 days in the NICU, he was on the ventilator for 16 days and in NICU III for 6 weeks. He did come home on Oxygen but did not have enough reflux to need a Gtube or the Nissen procedure. There is not a doubt in our mind that things would have been different if we had stayed in Nashville or gone elsewhere, Dr. Kays is the best Doctor in the world for this diagnosis. He saved our baby and for that we are forever grateful!
Charlie is now a happy and energetic 19 month old, you would never know that he had such a rough start to life!