Ty’s CDH Story
Our son Ty was diagnosed with CDH at our 20-week anatomy scan. We were told just the basics about the condition our son had, but we knew it was serious and were immediately sent to MFM. After getting established with the MFM, we had genetic testing to see if any other abnormalities accompanied Ty's hernia or if it was what they call an "isolated CDH." Fortunately, Ty's genetic testing came back clear. We had countless ultrasounds, a fetal MRI, a fetal echocardiogram, and meetings with the surgeons who would be fixing Ty's hernia. The fetal MRI indicated Ty's hernia was moderate to severe, left-sided, with partial liver up. We were told the possibility of him needing ECMO would be likely.
At the time, only two hospitals in the state of South Carolina had ECMO available in their NICU, and we lived 15 minutes from one of them. Of course, we looked into all of our options. Still, after much deliberation and discussion with physicians and surgeons who would be caring for Ty when he was born, we decided to stay in our home state and deliver in Columbia, South Carolina. On December 16, 2020, Ty was born via planned cesarean, which was our choice. They warned us he would probably not cry at birth, but he let out one little sweet squawk. The delivery room was FULL of nurses, doctors, respiratory therapists, etc. Ty was immediately intubated and whisked away to the NICU.
After about 5 hours of fighting on his own, the decision to put him on ECMO was made. The doctors told us it is ideal to be off of ECMO when the repair surgery is done, and we feared Ty would not be able to come off in time, but after 21 days, he finally was able to, and on day 22, his repair surgery was successfully completed. Going into it, you think to yourself, "If we can get the repair done, then he will heal, get better, and we can go home." But actually, the repair surgery is only the beginning. Ty fought sepsis, chylothorax, SVTs, pulmonary hypertension, opioid withdrawal, major feeding issues, reflux, and several more things. Before he could be discharged, Ty had a feeding tube placed and a Nissen fundoplication, which is a procedure to help with reflux.
After 123 days, he came HOME. I wish I could say it was easy, but it was not. Ty was readmitted about two months after discharge with a complete bowel obstruction that required surgery. He also had three hospital stays for various illnesses within his first year of being home. Honestly, the first two years of his life were HARD (like almost break you, hard), but fast forward to today, and the boy has made amazing strides!!!
He is three years and four months old, and after being home with his mom 24/7, he started a morning 3k program just this January. He did not sit up independently until he was 13 months old; he crawled at 18 months old and walked at 22 months. We have had physical therapy, speech therapy, and occupational therapy weekly since he was five months old (not including while he was in NICU), and he still currently has speech and occupational therapy. He graduated a while ago from physical therapy. His feeding tube was removed after having it for a total of two years. Thankfully, his body has gotten stronger, and he handles your typical kid viruses much better now.
There is a reason it has taken this long for us to share Ty's story. CDH is a hard, long journey; from what I have learned, ALL CDH stories are different. I have followed Tiny Hero since before Ty was born, read all the stories, and found HOPE that I would someday get to share our sweet Ty's story. It is scary, intimidating, and devastating, and nothing about your child having to go through this is fair. But it is NOT a death sentence. These babies are fighters; they have no choice but to be, and their parents and siblings are too!
