On December 8, 2017, my wife Ashley delivered our twins, Reynolds, and Campbell. She gets all the credit. I didn’t do any of the heavy lifting.
We always knew that Baby A was larger than Baby B, but we didn’t know why. And we had no idea that there were going to be complications at birth. The boys were born at 36 weeks via C-sections, immediately whisked away and taken to the NICU. Reynolds was eventually transferred to another NICU, while Campbell just needed a little more time to grow. So, Reynolds and I left Ashley and Campbell to go to a children’s hospital in Little Rock, Arkansas, where we ultimately spent 103 days in that NICU. He had airway issues. He had cardiac issues. He had GI issues. And throughout that entire time in the NICU, doctors knew that there was some underlying reason causing these issues, but no one could pinpoint it.
We were ultimately discharged on day 103 with a G-Tube and a lot of follow-ups. We spent the better part of the next year going to different doctors’ appointments and therapy. And I think at one point Reynolds probably had anywhere from 25 to 30 different providers, from neurologists to neurosurgeons to cardiologists and endocrinologists—because the conditions kept stacking up.
And at this point, we still did not have a definitive diagnosis. We ended up finally getting in to see a geneticist in Arkansas, where we did a whole genome sequencing test. And finally, in May 2019, Reynolds was diagnosed with Costello Syndrome.
Costello Syndrome is considered ultra-rare. It occurs in one out of every 300,000 births. Immediately like most parents, we googled Costello Syndrome. We came across the Costello Syndrome Family Network and were on the phone with another mom within the next 24 to 36 hours. That was helpful and insightful to hear from another parent, as there isn’t much research or information about Costello. It just so happened that we were diagnosed in May 2019, and in late July of that year, the Costello Family Network Summit was happening. The Summit happens every other year, so we just hit it at the right time. We went and got to meet a bunch of doctors from Nemours Children’s Hospital in Delaware that are really a huge part of the Costello Family Network.
Those doctors are Dr. Gripp, who is a geneticist, Dr. Doyle, who is an endocrinologist, and—I like to call them “Doctor Thackers” because Dr. Thacker is a cardiologist, and her husband, Dr. Thacker, is a pediatric orthopedic surgeon.
It was really great to connect with all of them—to have a team who really knew about Costello. The doctors in Arkansas were great, but they might have treated one other child with Costello. The doctors from Nemours were treating several dozen kids with Costello. So eventually, we decided to go get established at Nemours Children’s. The providers from both children’s hospitals were great, and even connected before our first trip to Nemours.
The greatest thing about Nemours was the patient navigation team. They walked us through all the different appointments, the timing, the scheduling. It was just a seamless, unbelievable experience going there. From the time we got to the lobby to the time we left, we had that agenda, and that doesn’t happen at a lot of hospitals.
One of the things about Costello is that there’s no cure. You manage the symptoms. It requires a ton of caregiving; a job most parents never imagine when having a child.
Now, Reynolds at age 5, is doing awesome. On paper, he is a very medically fragile, complex kid. But he’s the mayor of his school. He high fives everybody. He’s starting to talk. He’s slowly starting to eat. He’s super friendly. He does equine therapy, so he rides horses once a week. He’s wrestling with his two brothers. For the longest time, Reynolds didn’t really move around; he was just observing and constantly having surgeries and medications and treatments administered. And now he’s right in the mix with his brothers and other kids his age. It’s what every parent hopes for.
He has just overcome so many challenges. And has gone through more than most in a lifetime. He’s an inspiration. Being in the Rare community has opened our eyes and has introduced us to so many great families navigating Rare Disease as well.
Ryan Sheedy is a dad, a full-time caregiver, and a co-founder of mejo, an app that aims to personalize and prioritize unique information compiled into a medical and care journal for kids. Read more about mejo here: www.mymejo.com
