There is Hope for your CDH Baby
The day that everything changed, July 25th, 2016. I will never forget that day. My husband met me at the midwife’s office for the big anatomy scan. We knew it would take longer than other scans, and we were excited to spend extra time admiring our baby on the screen. It was all so exciting. We saw her little toes, fingers, nose, and heart. The tech measured her other organs, but she kept going back to the heart. This concerned me, and I knew deep down something wasn’t right. I asked the nurse, “Is there something wrong with our baby girl?” The room fell silent, and it felt like time stood still. It was then that we heard those dreaded words you never want to hear. “There is something wrong with your baby. Her heart isn’t where it should be.” My own heart dropped as it does on the steepest of roller coasters. I didn’t know what to do or what to think. She advised she thought our baby had a CCAP/CPAM and that it was pushing the heart over. She said that it could be serious and set us up an appointment with a high-risk specialist to confirm a few days later. I remember leaving the appointment heartbroken. I will never forget winding around the parking garage alone with my husband in the car in front of me. I felt lost and began blaming myself. Then the googling started. The chances of survival for CCAM were low depending on the feeder vessels and how big the CCAM was. If it was large, then her lung would be stunted. Those next few days were so hard, but the day of the appointment was horrible. My heart was in my throat, and my eyes were red from a flow of tears that never seemed to stop. I hoped and prayed for good news. After more scans, they said three little letters that would shape the rest of our families’ lives, CDH. We were going to have a CDH baby.
This hospital told us that the midwife was wrong. Our daughter didn’t have CCAM. She actually had a rare birth defect called CDH. I remember asking, “Is having a CDH baby better or worse than a baby with CCAM?” Their response wasn’t what I hoped to hear. They told us it was worse, much worse, and that half of babies with this condition don’t survive, and the ones that do have little to no quality of life. They advised us of the time frame for abortion and said that with her being right-sided CDH, and the number of organs in her chest cavity, that she had less than 20% chance of survival and that they wouldn’t be able to deliver her there, we needed a larger hospital. Once we told them abortion was not an option; they referred us to a larger hospital 3 hours away. I left that appointment, still wondering, “what is CDH?!” and with absolutely no hope.
I turned to Facebook, hoping to find a support group because everything I found online was scary, to say the least. I found Tiny Hero and posted about our sweet girl. The first thing I noticed were these beautiful children were playing, walking, eating... LIVING. This wasn’t what I was told about children who happened to survive this horrible defect. I then learn of a doctor with over 90% survival. Sobbing, I told my husband that I didn’t want to go to the hospital in Tennessee. I wanted to meet this doctor. My mind was made up. I didn’t know how we would relocate out of state, especially with an 18-month-old, but I had to figure it out. I found this top CDH surgeon at 3 AM on July 29th. He wrote me back 6 hours later with the most beautiful hope-filled words I had received in days. Finally, I was able to squeeze out a little smile. We corresponded several times between then and our August 12th appointment at our local children’s hospital. I went to that appointment, hopeful! The local hospital is familiar with CDH and has had success, but after several more scans, we were told our daughter had right-sided CDH (not left), and she had a left-sided CCAM with all of her liver in her chest. They told us our time was running out to abort. They didn’t offer another option until we said termination wasn’t something we’d consider. They told us plain as day that her chances were slim, under 10%, and that she would be a vegetable if she did survive. The doctor was nice but didn’t have any hope for her survival. When we left, we had our answer. We needed a third opinion. We needed to travel to give our baby girl the best chance of survival. We left that appointment ready to move temporarily or permanently, and it didn’t matter. We got everything set for an appointment out of state on 9/12 for an MRI and ultrasounds. 9/13 was our consult, and a hotel was arranged for us by Tiny Hero. We were in shock. Not only had we gone from heartache to hope, but people truly cared about our daughter and us. It was truly amazing. The experience was completely different. They didn’t talk of abortions, low chance of survival, or anything sad. They were a ray of light. They asked about our 18-month-old son and asked us our pets’ names. They made it personal. They used our daughter’s name. She was a person to them. She wasn’t just a sick fetus. She was special to them. They told us based on what they saw in the MRI, she had a 90% chance of survival and a 95% chance of ECMO. 90%, not ten, 90! We relocated a month later. We stayed in a beautiful Ronald McDonald House within walking distance from the hospital. They provided amazing accommodations, play spaces for our son, free meals, and free parking. We lived among 12 other families, all experiencing a CDH rollercoaster of their own, and those 12 families became our family! We didn’t have to face it alone!
On 11/21, we met our beautiful daughter. She was on ECMO for five and a half days, had her repair surgery on ECMO at 24 hours old, and discharged on January 5th at just 45 days old. Yes, that’s right; the baby we were told to terminate by not one, but two different hospitals, came home at 45 days old. She is now a 3-year-old feisty, full of life, toddler who keeps us on our toes and shows everyone what she is made of and telling everyone who her heroes are; her doctor, his team, and everyone at Tiny Hero.
So I leave you with this if you aren’t given hope, if the doctors do not believe in your baby’s ability to survive, get a second or third opinion. Seek out a quality CDH surgeon at a hospital that has a top-notch CDH program. Find someone that believes in your baby’s ability to survive and thrive. Find someone that will fight for them every step of the way and has the skills to redefine impossible. Remember, not all hospitals are the same, and sometimes even the best children’s hospitals in the country aren’t the answer when it comes to CDH specifically. If you aren’t given hope, go the extra mile (or miles) to find the perfect team for your family. There are resources out there to make relocating for care possible, and there is a CDH support system out there that will help you throughout your journey. Find a doctor that will turn your heartache into hope!
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