Lilith’s Story - Congenital Diaphragmatic Hernia (CDH)
On January 8, 2021, 2 days before my 27th birthday, I took a pregnancy test and it came out positive. We were so excited that we got pregnant right away. I remember thinking, "Is this too good to be true!?" barely believing how quickly it happened.
On May 12, Harold (dad) and I went to the 20-week anatomy scan. We were so excited to see Lilith! We had bloodwork done at 12 weeks and were happy to find out that we would be having a girl and that no issues came up on the genetic test. Until that is, at the ultrasound when the technician said, "the stomach is in the chest cavity." I knew that wasn't normal. We went to the waiting room, where I immediately googled what the technician had said. Everything I found was horrifying and all I could do was cry.
We finally had the opportunity to see the OB and she referred us to an MFM doctor for a thorough ultrasound. She told us we would have to deliver at a different hospital if it was Congenital Diaphragmatic Hernia (CDH). I cried. I remember thinking, "it was too good to be true."
On May 13, 2021, we went to the MFM appointment, had a long ultrasound done, and consulted with the doctor. The doctor said it appeared that the stomach, spleen, bowel, and colon were in the chest and it appeared to be CDH. He said we would need to do an amniocentesis to rule out other genetic issues because CDH could be the tip of the iceberg (HE WAS SO WRONG). He said if there are other genetic issues, unfortunately, your daughter won't see her 1st birthday. He also mentioned going across state lines to terminate the pregnancy if we could not mentally or financially handle this. I sobbed. I didn't hear anything else - I just cried.
Harold asked, "what do we do next?" The doctor said the next step would be an amniocentesis which we agreed to do. They did it right there in the office and told us we would have to wait 2 weeks for results. The day before we were supposed to get the results, the MFM office called and said, "We lost the amniotic fluid. Can you come to do it again?" I was so mad! I cried all day. I called my mom and she said we need to consider Dr. Kays. I didn't think relocating was possible. That's when we decided to look into going to St. Petersburg, FL to see Dr. David Kays at John Hopkins All Children's Hospital.
I made a post in a few CDH groups on Facebook and the journey started. I called Joy Perkins, told her everything, and she got us a consult with Dr. Kays and all our appointments.
On June 29, 2021, my mom, Sherri, and I flew to Tampa from Arizona. Harold had to work, so my mom came with me. We had an MRI, echocardiogram, consults, and many ultrasounds. We met with Dr. Kays and he said she has 15-20% liver up, stomach, spleen, colon, and bowel in her chest. She would be in the NICU for approximately 10-12 weeks. He believed she had a survival rate between 90-95% and a 33% chance of ECMO.
On July 27, my 2-year-old daughter, Zoey, and I flew to Tampa to relocate. Sherri drove here and Lilith’s dad came at the induction date due to work. I was 32 weeks pregnant at this point and I had weekly appointments and ultrasounds.
On September 7, they checked me into the hospital to start the process! It was a quick and easy labor and delivery with no epidural. Unfortunately, I had to have a D&C because my placenta wouldn't detach.
Lilith May Bidlack was born September 8, 2021, at 11:40 AM, weighing 6 pounds 6 ounces and 20 inches long. She cried. We cried. Then they immediately intubated her and took her to the NICU to get her stable. She was doing amazing! They scheduled her repair surgery for September 13, 2021. Those 5 days, we just waited and prayed she stayed stable. And SHE DID!
On September 13, she had her repair surgery. She had 25% liver up, stomach, spleen, colon, and bowel in her chest. She had only 25% lung volume and a massive hole in her diaphragm.
On September 19, Lilith was extubated and on CPAP! The next day, we got to hold her for the first time! 12 days old and I could finally hold my baby. The RNs and doctors said she was doing amazing. They all were shocked at her progress and how well she was doing! Four days later, Lily was put on wall oxygen, and we began feeding. She started with just 5 milliliters of breast milk. Every day, we slowly increased her volumes and got her eating completely by mouth!
October 11, 2021, we were discharged. I never thought back on May 13th that this day would ever happen!
Between September 23rd and October 11th, all we worked on was feeding and gaining weight. This felt like the longest part! We worked with a speech therapist and nurses to get her to increase her intake volumes and help her gain weight. I celebrated the weight gains and got sad, anxious, and mad at the losses because I felt like, "what else could I do for her?" As moms, sometimes, we blame ourselves for everything.
We are so blessed to have only spent 33 days in the NICU with Lilith. The staff at John Hopkins All Children's Hospital loved Lily and made us feel like family!
