Amya's Story - Congenital Diaphragmatic Hernia (CDH)
When I was 20 weeks pregnant I went for my normal anatomy scan, the doctor thought that since Amya has not turned yet that they just could not see part of her heart. After trying multiple times they finally decided to send me to Gainesville for a level 2 ultrasound. The doctor assured me that everything was okay though. Once we got to Gainesville the doctor they knew exactly what it was. He wrote on a piece of paper, CDH. I had no idea what that even was. He told me it was a 97 percent survival rate but she would need surgery and a long hospital stay. Once I got home I started to research and started to find out that this was a horrible birth defect.
The more and more I googled things I kept seeing Dr. David Kays. I thought he was still in Gainesville at the time , which is why the doctor gave me such a high survival rate , we’ll come to find out he was not. I went back and forth , spoke to my husband and family about what we should do. My sister in law reached out to a friend of hers who was a nurse in the nicu at Shands hospital in Gainesville and assured me to go wherever Dr. Kays was. Once I heard that I filled out a form online for John Hopkins and within an hour Joy had called me and answered all my questions. She made me finally feel like I had some hope. She did everything for me to make my transition to John Hopkins as easy as possible. Luckily for us John Hopkins is only a two hour drive for us. So we transferred all my doctors there and started getting checked out but their team.
I was induced at 37 weeks on June 23rd, 2019. Amya made her arrival at midnight on the dot on June, 25th. Amya did not cry or make any sounds when she was first born. As soon as she was born Dr. Kay’s came to us saying she needed to be put on ecmo right away. She took a minute to stabilize and was only weighing 4 pounds 8 ounces. Amya had her repair surgery later that same day because she was so sick. She had only 3 percent of her left diaphragm and 30 percent liver up. Dr. Kays had to place a patch that was sewed into both sides of her ribs. After surgery Dr. Kays sat me and my husband down and said now it’s Amyas turn to fight and survive. Amya did just that. She was on ecmo for 2 weeks. The day she turned 2 weeks old they took the ecmo away and it was time for her to start breathing more on her own. Amya was extabated 9 days later.
After this Amya took a little longer to move forward. Cpap was a slower process for her. She was on Cpap for 2 weeks then had to go back on it after they moved her room one night and it caused too much ruckus for her. Once Amya was finally able to go onto wall oxygen, came eating. Amya wasn’t the greatest or worse at eating but reflex was definitely not in her favor. After a month of trying it was finally time to decide that she needed the Nissen and Gtube surgery. This meant another surgery , which meant breathing tube had to go back in. After the surgery Amya was extabated again but about an hour after surgery Amya wasn’t fully her self. She could not get out of the sedation. Dr.Kays felt she was not breathing fast enough by herself so the words I dreaded came out. The breathing tube was coming back. It felt like we were starting all over when we were supposed to be hearing the word discharge soon. Amya had the breathing tube for 6 days. Then came cpap again and then wall oxygen.
Now we start the process over or re introducing feeds. Feeds is something we will always work on. Also weight gain. Amya was born at such a low birth weight that it will always be against her. But Dr.Kays and his team have been so amazing with getting her where she needs to be. Today Amya is one week shy of 4 months old. Today we went off of oxygen for good and she is hitting every milestone she is supposed to. Our only obstacle is gaining weight but we will get there one day. We are forever thankful for Dr.Kays , Dr.Stone , Dr. Smithers, all the nurse practitioners and nurses at John Hopkins for giving Amya a normal life! Cdh is definitely not a easy road and it’s definitely not over but John Hopkins made it feel as “normal” as it can and my experience was beyond better then what google tells you.