Addie Ann's Story - Congenital Diaphragmatic Hernia (CDH)
At 22 weeks we were having a routine ultrasound for the anatomy scan. The doctor stopped only a minute in and said “Something is wrong with the baby, I think she has Congenital Diaphragmatic Hernia.” I started crying so my mom started asking questions (my fiancé, Nathan, was at work). The doctor told us she would need surgery, a really good hospital, and that she only had a 50% chance to survive. They also said that I should abort her. I turned down that offer what feels like 20 times. I started googling and I couldn’t help, but felt like it was my fault, I cried for a long time and had to start anxiety medication.
I was referred to Cedars Sinai in Hollywood, California where my Maternal Fetal specialist was. I basically lived at the doctors, I was there at least 4x a week for at least 3 hours each visit having ultrasounds and non stress tests. I moved out to LA, leaving behind Nathan, who had to work, and my three year old daughter with my mom. The time came to finally be induced, I had everyone there for support, at 10:31pm Addie Ann August was born, surrounded by at least 30 doctors/nurses/specialists. They whisked her away and intubated her immediately. I heard one small cry.
I met her two hours later after my epidural wore off. I had to be wheel chaired to the nicu because I couldn’t keep my balance. I saw her in her tiny little box and my heart hurt so bad. They said that she was doing okay, family came in to meet her, but they had to be quiet since she was super sensitive to light, sound, and touch.
12 hours later her oxygen saturation dropped to 50. They called us and told us to come now. They were transferring her to the PICU for a private room. Once we got there, they were setting up for ECMO and she started into cardiac arrest. I was sitting in my wheel chair and Nathan was standing behind me, we were crying so hard and saying we were scared, I’ve never seen him cry until that day. We watched them pump her chest and bag her, scrambling to get her back. They finally did and we had a pastor come baptize her.
They put her on ECMO and said now we wait. Days go by and nothing happens. Then her kidneys failed. No urine for three whole days. We almost started dialysis, but they decided to try a medication used in adults and it worked, she started to slowly put out urine again. Then her brain started bleeding from all the heparin. She was on at least 20 different meds. They sat us down on day 16 and said “I’m sorry, but I think you should prepare for the worst, do not get your hopes up, she has 20% chance of survival, and if she does survive she won’t have any quality of life. She will probably be blind and / or deaf, she may never walk or talk.”
I broke. I broke into a million pieces. Nathan quit his job to come be with Addie and me. The next day they took her regular X-ray to check the status of her lungs. Her lungs had unfolded and pushed her intestines out of her chest. She was able to come off the ECMO 2 days later! They told me they didn’t know how or why, but they were happy. After that we were moved back into the NICU, went back down to a regular ventilator, and got her surgery on day 27. She came off the vent and was put on to CPAP 4 days after surgery.
We struggled with feeds for weeks because she had a paralyzed vocal cord and couldn’t drink regular milk. Her milk was “nectar” thick, which made it really hard for her to suck out. On February 8 (almost three months later) we decided to get a g-tube. At this point she was on oxygen still and now had a g-tube.
February 16th, 3 months old, she was finally discharged home. We struggled with feeds and muscle delays and started therapy. She was struggling with her lungs and over the year we went from 24/7 oxygen to only sleeping to 24/7 oxygen. She caught up with her muscle and brain development and was using sign language, talking, walking, and just being a miracle! Today Addie is 2 years old and she walks runs, screams, plays, and eats great! She is struggling with her lungs, her diagnosis is pulmonary hypertension, chronic lung disease, and asthma and is on multiple medications and has absence seizures. We still have procedures and surgeries to worry about, but she’s a very happy girl and such a firecracker! We love her and her scars that tell an amazing story and we always take the chance to spread awareness. Addie Ann August, born November 19th, 2016 kicked CDH in the butt!