Amelia’s CDH Story

We found out we were pregnant with Amelia in June 2023. We have a son, Samuel, who is four, and we were so excited to give him a little brother or sister! At our anatomy scan on October 13, 2023, we found out we were having a little girl! I’ve always wanted a daughter…I’m a huge Gilmore Girls fan and I was finally getting my Rory! 

Once our scan was finished, we met with the doctor. He came in and said the words, “Congenital Diaphragmatic Hernia.” My husband and I had never heard of this defect before. All we were told was that we would have to be seen by a high-risk MFM and that our daughter would require surgery after she was born. They also told us we would have to go to UAMS in Little Rock because our local hospital could not help us. After going down the Google rabbit hole, we were optimistic that Amelia’s hernia was small and that not a lot had herniated into her chest cavity. 

A week later, we were seen at UAMS. While getting our ultrasound, I noticed a small black hole around Amelia’s chest. I asked the ultrasound tech, “Is that her heart?” She said, “No, that is her stomach…this is her heart,” and pointed right next to the black hole. Her stomach was right next to her heart. Every heartbeat pushed into her stomach. After what felt like hours, the ultrasound was finished, and we heard the news we had been dreading, “Severe Left-Sided CDH” with “liver, stomach, intestines, colon, spleen are all up.” The prognosis was not good. My mind was spinning, and all I could think about was that I was about to lose my daughter. We had an amniocentesis done to rule out any genetic factors that may have played a factor in her defect. UAMS also told us our best chance at keeping Amelia alive would be to go to Houston and see the CDH team at Children’s Memorial Hermann.

HOUSTON?! We have jobs. We have a son. We can’t go to Houston!! But on November 8th, we made the eight-hour trip down to see what the CDH team had to offer. We spent 3 days down there getting tests, MRIs, ultrasounds, and meeting with every person who would have a hand in saving our daughter’s life. We were also told about a procedure called FETO. They didn’t have a lot of data to ease our minds completely, but Dr. Matthew Harting did seem confident it could increase Amelia’s chance of survival. Amelia’s LHR was less than 24%, so she qualified for the procedure. If we agreed and went through with it, we would have to move to Houston and stay until she was released from the NICU. 

We decided that if we were to lose Amelia, we would want to do everything we could to save her. FETO was her best and, frankly, her only chance at life. 

I teach Kindergarten. It was the middle of the school year. My husband works for a local bank, and our son is in preschool. We made the difficult decision to move to Houston and leave our son with his grandparents so he could continue school and maintain a sense of normality. We packed up and moved down on November 26th, and we had our FETO procedure on November 29th. To quote our doctor, it was “boring.”

That became our motto for the rest of my pregnancy: stay boring! I was on limited bed rest, and we spent the next two months going to weekly doctor’s appointments, spending around three weeks combined in the hospital for various mild complications.  

On January 12, I went for a doctor’s appointment to get a steroid shot because we were scheduled to get the balloon popped on the 17th. When I mentioned I hadn’t felt Amelia move as much as normal and I was having mild cramps, they sent me over to the hospital for monitoring. What I thought would be an easy overnight stay for monitoring turned into an emergency c-section. 

It turned out I was having contractions, and with each contraction, Amelia’s heart rate dropped drastically. They called the team in, and at 2:40 pm on January 13, 2024, our miracle baby, Amelia Jayne Oglesby, was born! And in the middle of the Great Houston Ice Storm of 2024!

She was immediately intubated and, for the most part, doing really well! She needed a chest tube to drain fluid from her lungs since she was not able to get the balloon popped before delivery. At four days old, they operated and repaired her hernia. They found she had a diaphragm medially covering her esophagus, but that was about it. She struggled with some blood pressure issues, but overall, she did extremely well. She NEVER required ECMO, and after seventeen days, she was extubated. Two weeks after coming off the vent, she was on room air, officially out of the main NICU, and moved into a private step-down room. 

From then on, our main problem was feeding. She was silently aspirating her bottles, and eventually, she required a G-tube. This was our ticket home, and after 74 days in the NICU, on March 26, we busted out and went home to Arkansas!!!! 

Being home with her big brother and having our family together has been amazing. As soon as we got home, she started PT, OT, and feeding therapy. 

Our main hiccup since coming home has been a major bowel obstruction at 5 months old. We noticed she was very pale and lethargic, and a bright green color was draining out of her G-tube. She needed emergency bowel resection surgery on June 7, and she lost 70cm of her bowel. Turns out, her bowels were attached to scar tissue from her hernia repair surgery, twisted and twisted and twisted, which caused parts of it to die. She was septic, and we are thankful to the doctors at Arkansas Children’s for not dismissing her and saving her life. After a two-week stay, she was discharged on Father’s Day and has made a full recovery!

Amelia has not had it easy. But what I have found out through this journey is that she is not alone in her struggles. There are thousands of other boys and girls going through the same issues she is facing. However, she is so blessed. She is here with us. I can hold her, kiss her, rock her to sleep, and love her unconditionally every day. Being her mom is an honor, and I don’t take it lightly. I firmly believe in the power of prayer and that God performs miracles every day.  Every breath my daughter takes is a miracle. Thanks to her team of doctors, nurses, and our loved ones for their unwavering prayers, Amelia gets to grow up and share her testimony! (And show off her cool scars!)