Cash’s CDH Story
It all started back in October 2024 when I found out I was pregnant with our first baby. We were shocked but excited. I had only been off birth control for two weeks.
Thanksgiving rolled around, and I had made it through the first trimester. We finally announced to everyone that we were expecting.
December 13 – I went to the OB-GYN for a normal checkup, and I also did the NIPT screening and blood work to find out the gender. Apparently, the practice I attend requires an early anatomy scan if you’re getting the screening done. That’s where I was told our baby could potentially have something called CDH. The MFM didn’t 100% confirm this and asked me to come back in three weeks to reconfirm. Of course, I went home, did my own research, and spiraled—not knowing what to do or how to process any of it.
January 5 – Gender reveal. We found out it was a boy! Despite the uncertainty of the diagnosis, we were so excited because we had hoped for a boy.
January 6 – Follow-up appointment to confirm the diagnosis. Sure enough, he had CDH. Unfortunately, I went to this appointment alone and had to find out by myself.
Throughout the rest of the month, multiple appointments were scheduled to prepare us for the remainder of the pregnancy and his arrival (multiple ultrasounds, amniocentesis, etc.).
February 1 – I was rushed to the ER because I was experiencing an ungodly amount of pain. I found out I had gallstones and was sent home with medication to get me through.
February 17 – While on a trip out of state, I had gallstone attacks so severe that we cut the trip short and drove 13½ hours straight home—going directly to the hospital. They told us they needed to remove my gallbladder and that it was the perfect time frame to do so (the middle of the second trimester). The surgery seemingly went well.
But that night, something went terribly wrong. I went back to the ER and found out gallstones had already left my gallbladder and gotten stuck in my bile ducts, causing more issues that almost led to infection and resulted in another surgery.
At some point during February, I also had a fetal echo, fetal MRI, and spoke with a genetic counselor while waiting to hear from a fetal specialist in Houston.
March 6 – We drove to Houston to meet with the fetal center and create a game plan. That’s when we learned I needed to go home, pack up my entire life, and move to Houston to live at the Ronald McDonald House by March 16.
March 17 – I had my first fetal surgery: FETO (fetoscopic endoluminal tracheal occlusion). Because of this surgery, I was required to stay within 30 minutes of the hospital at all times until the balloon was removed. Leading up to the removal procedure, I was seen by the fetal center every single week for imaging, measurements, and visits with the high-risk OB-GYN.
May 5 – FETO removal. Unfortunately, the balloon did not deflate, so I was kept in antepartum until Friday to attempt deflation again. The second attempt was successful. I remained hospitalized for monitoring until May 21 because I had polyhydramnios and a partial placental abruption.
May 26 – My water broke at 11:00 p.m.
May 27 – My son was officially born later that evening. I hemorrhaged and lost an astronomical amount of blood. All of my pain management failed. I had mostly second-degree tears with a small third-degree tear. I was in such bad shape they couldn’t finish stitching me up at that time.
May 28 – I had a D&C to clean out my uterus, stop the bleeding, and complete the stitches, along with a blood transfusion.
June 2 – My son had his repair surgery, and it went amazingly well. He was intubated for a few weeks and remained in the NICU until July 3. However, on the way out of the NICU, he coded due to silent aspiration. He then had a fundoplication and a G-tube placed. In total, he spent 63 days in the NICU.
I also want to add that I was awake for every single surgery I had, except for the gallbladder surgeries. I was “drugged up,” but very aware and awake.
All in all, I had six surgeries during pregnancy, and my son had two major open surgeries in the first two months of life—but we are both finally healthy. He is seven months old now and doing so well. He beat literally every odd imaginable. He still has his G-tube, and we work with an OT to help him transition to oral feeds.
