Emery Aaliyah's Story - Congenital Diaphragmatic Hernia (CDH)

Creating a little mini-me of you and your partner has to be the most beautiful thing ever. You stay away from certain foods, take your prenatal pills, and go to every appointment. And then, you get shocking news about your baby, and everything changes. You can't stop blaming yourself. How could this happen? What did I do? Is my baby going to make it? What is this? You continuously pray to God to let your baby live, to be born, to fight, and to make it.

My boyfriend and I went to our 20-week anatomy scan appointment. The only thing we were thinking about going into the appointment was finding out if our sweet baby would be a boy or a girl. The ultrasound tech looked at each body part, and it seemed like everything was okay. He did say that the stomach looked distended. He called in another tech and said the same thing. They didn't look worried and stated it might be the position she was in. We left the doctor's office without a worry knowing our baby was a GIRL!

A few days later, I got an email from my OB doctor saying they need me to come back to retake pictures. At that point, I was nervous. I was thinking to myself, I hope this time they get good pictures and that everything was okay. We went back to the doctor's office and retook the photos. The tech told us the doctor would contact us. We went back a couple of weeks later to my OB, and she said it was still looking the same. The stomach looked distended. She said it might be a bowel blockage that the baby developed. She referred us to a high-risk doctor. Unfortunately, it took us a while to see the high-risk doctor.

At 31 weeks pregnant, I went to another doctor's appointment to do a very detailed anatomy scan. At first, everything seemed fine. She called in another nurse to take a look. At this point, I was praying to God; please let everything be okay; please let my baby girl be okay. She said to the nurse," The heart looks like it's pushed to the right." I stayed quiet, not knowing what this meant. I was still hoping everything was okay. The other nurse left, and my high-risk doctor took more pictures. She told me my baby girl's heart was pushed to the right, and it looked like her stomach was up in her chest. She said, "It's a congenital diaphragmatic hernia." I was listening to her talk, still not knowing what all this meant for my sweet baby. She explained how her heart was pushed to the right, and her stomach was up in her chest, limiting her lung growth. Now I was trying to hold back my tears while she continued talking about all the absolute worst things that could happen. She said if my baby is born, she might not be able to breathe when she comes out, she might have Down syndrome, or she might be stillborn. She also said she would need surgery (maybe more than one ), and she can have all these life long problems. She asked if I wanted to terminate or if I wanted to continue to carry my baby. At that point, I was bawling. I was crying while trying to convince myself this is not happening. This is not happening to us; why our baby girl? She told me I would have to let her know in the next 2 weeks if we wanted to terminate.

My boyfriend and I thought about it and talked things through. We didn't want our daughter to have to suffer her first months of life. We couldn't watch her be in pain and go through several surgeries. Then we talked about how God put her in our lives for a reason, how she was still growing and kicking in my stomach, meeting all other growth measurements. What if we terminated her and find out later she would have survived? We couldn't do that. We wanted to give her the best chance at life.

I went to have my MRI and another anatomy scan at a different hospital. This would confirm what organs were up in the chest, the lung growth, and how the heart was looking. They checked my daughter's heart and her heart was perfectly fine despite it being on the right side. They found a fair amount of lung and stomach. Her intestines were pushed into her chest, but the liver was still down. Now, this high-risk doctor gave me better hope than my previous one. She explained how her hernia was on the left side, and typically babies with LCDH have better outcomes. She said she would definitely need surgery and a stay in the NICU. She had a chance, even though it depended on how she did when she arrived.

I had a stress test twice a week from then on until my scheduled induction date. I met with our surgeon, who gave us even more hope. I met with our NICU team, who made us feel safer because they have dealt with CDH babies before. They explained how she had to be intubated right after delivery and taken by the NICU team. They would keep her stable until she was ready for her repair surgery. They gave us an estimate of about 1 month (give or take) on her stay.

I ended up having a C-section because our baby girl wasn't dropping. She stayed up high despite me dilating to 6/7 centimeters. When they pulled her out, she let out a little cry, and they immediately took her to intubated her. I kept asking my boyfriend, who was right beside me, is she okay? He assured me she was fine, and the NICU team was with her. I looked over at her so worried while 4-5 nurses/doctors are standing over her. They took her over to the NICU, and her daddy went with her while they finish with me. They wheeled my bed down to her room, and I get to see her for just a few minutes. I saw my little princess with a tube down her throat and the monitors she was hooked up to. I was scared and hurt that my Emery had to go through this.

I went down to see her the next day. As soon as I got up and walking, they said she was stable and comfortable, and her numbers were good. Her NICU nurses said she didn't need to be put on ECMO, which I was happy about. After going home, we went to visit her every day. It was so hard for me to see my daughter like that and leave her at the hospital every day. I cried so much. I would break down crying. My heart hurt so much that my baby was away from me, going through so much. I worried so much. I was always overthinking things, which made it worse.

At 6 days old, on March 4, 2019, at 9 am, she went in for her repair surgery. Waiting for almost 2 hours was the scariest thing ever. I was filled with anxiety. I was hoping and praying the whole time that everything would go smoothly and without complications. After her surgeon came out and said, everything went perfectly as they had expected. They were able to repair her laparoscopically, with no patch. We went to see her after that, and we told her how strong and amazing she was. We told her we loved her so much, we kissed her and thanked God everything went so well. She was on 20% oxygen right when she was intubated, which is what we breathe, so that was great. About 4 days after her surgery on March 8, 2019, the tube was removed, and she had a CPAP placed in her nose for airway pressure and had a suction.

On March 12, 2019, she was breathing room air, and an NG tube was placed in her nose to start her feedings. She started at about 10 mls of breast milk and quickly went up to 70 mls. It took Emery 2 weeks and 3 days to be an expert with her bottle feedings without having to use the NG tube. She had it taken out on March 29, 2019, and her NICU nurses wanted to make sure she certainly could drink all her feedings without her NG tube having to be replaced. She was able to do it! And we were some proud and grateful parents!

On April 1, 2019, we were finally discharged after 36 days in the NICU. We came home without any breathing support, feeding tubes, or medication. We were only told to give her vitamins (tri-vi-sol). She came home at 1 month and 6 days. She’s our strong baby girl, and we are so proud of our little warrior. We are still shocked and amazed by everything she went through. We look at her everyday thinking back on how far she’s come. We are truly blessed to have our daughter. She’s here, she’s beautiful, she’s our Emery Aaliyah.