Allison was diagnosed with CDH at our standard 20 week ultrasound. We had the ultrasound done on December 20th, 2010. The follow up appointment was the following day, our 2 year wedding anniversary. I went in and it seemed like any other appointment. They checked my weight, took my blood pressure, and the doctor came in to chat. She asked how I have been feeling just as she always had. She then pulled out the ultrasound information for us to go over. "We found an anomaly on your ultrasound” the doctor told us. “Your little girl has a hole in her diaphragm that has allowed her stomach to move up and prevent her from having normal lung development. I can no longer be your doctor. We are referring you to a specialist for a closer look."
We starting learning lots of things that we wished we never had to know about. We had never heard of CDH before, but now we knew everything there was to know about it. We found out what a perinatalogist does, what LHR determines, where the best NICU was, what ECMO is, what NST stands for, what FISH results show, etc., etc. It was a very long and stressful pregnancy. Starting at 28 weeks, we went in twice a week for an ultrasound and non-stress test. Also, at about 28 weeks I was diagnosed with polyhydramnios. They told us that they expected that with Alli’s condition, and they had been watching for it. Unfortunately even with all the examining we were under, they had no idea how severe Allison’s condition was, or that she would show up six weeks early.
Allison was born April 7th, 2011 – almost two months too early. My water broke right as I was arriving home from work. My mom rushed over to take me to the hospital. My husband was at work and would be right behind us. The hospital Allison needed to be at was an hour’s drive. We got there and there was no stopping her arrival. We were so frightened because of how many times we had heard that Allison needed to be born full term to survive her condition and the surgery required to fix her. It was an easy labor and birth aside from all the stress. As Allison arrived, the room filled with eight or more doctors and nurses. The moment she came they whisked her off to be intubated and set up in the NICU on all sorts of tubes, wires, and machines. I had just had a baby girl, 5lbs 2oz. 18 inches long, but it would be several hours before I was allowed to see her and much longer before I could hold her.
The first five days were the longest going back and forth from “She might not make it through the night,” to “We will schedule surgery soon.” Finally on that fifth day she was stable enough for surgery. During surgery they discovered that Allison was actually missing all but a sliver of diaphragm. All of her stomach contents were in her chest and she only had a nub of lung tissue on the left side and only ½ a lung on the right. They did a Gortex patch repair, and we all crossed our fingers. It was another week before she was breathing on her own and we were able to hold her for the first time. We were so proud to have such a fighter. The machines and wires slowly started dwindling away. After six long weeks she was breathing room air and getting enough to eat on her own, so they decided that she could come home. We finally left that NICU room with a baby in arms on the day she was due to be born.
After arriving home, it was only one day before we found Allison having bloody stools. We immediately took her into her new pediatrician’s office and they diagnosed her with milk protein allergies. It is unfortunate that she has these allergies, but we were so glad to hear that it was not anything a simple diet change couldn’t fix. After trying several different diets for my breast milk and even more types of formula, we are finally starting to get Allison figured out. She now gets a medical grade hypoallergenic formula delivered in crates monthly and is on Prevacid for acid reflux. We have had our number of appointments discussing that as well. We have been told that because Allison has a different make up inside, reflux is just something that we are going to have to get through. The hope is that she can grow out of it by the time she is a year old. Until then, we will just have lots of laundry and carpet cleaning to do.
The first three months at home were filled with appointment after appointment. Her surgeon wanted to see her monthly for an x-ray, the pediatrician wanted to see her weekly for weight checks, the cardiologist needed to check up on the small holes they had found in her heart during her NICU stay, and we started seeing a GI specialist about Allison’s allergies and reflux. Now into the 4th month, we are finally down too only being scheduled for the standard well baby exam every two months. The surgeon decided at our last appointment that her repair looks perfect and that he no longer needed to see her unless we had concerns. The heart doctor told us that her heart seems to be unaffected by the holes and that she would not need to see him again until she was a year old. The GI specialist got her on the special formula and we only call him for advice about her reflux once in a while. And Allison is finally on track with her weight gain, so the Pediatrician. said we no longer had to come in for weight checks.
It has been a long journey, but we are so proud to say that Allison is doing amazing. We did have one little scare with some aspiration pneumonia a couple of weeks back, but we caught it early and it was nothing a little antibiotic didn’t clear up quickly. She is a beautiful, happy, and healthy - almost six month old baby girl, and she is meeting all of her social and physical milestones right on time and some a little early. Of course her charting goes by her adjusted age of four months, but none-the-less she has impressed everyone – all of her doctors, all of her therapists, and of course us! We will be starting her on some solid foods for her upcoming half birthday and we are so excited to start living with her the way that most parents get to with their little ones – without all the extra worry and appointments. We will be following quarantine protocols for her first winter with lots of hand washing and flu shots, but other than that she is no different from any other baby. All that’s left of her tragic start is a thin scare along her left rib cage, and bit of adorable petiteness.
~Alexis, Allison's Mommy
