Jude’s Story
Our daughter, Jude, does things her own way. The doctor who delivered her jokingly called her "The Fast and the Furious" due to the wild way she entered the world--breech with no epidural and no c-section--a first for her doctor, nurses, and, of course, me. After the drama of the birth, both my wife and I were looking forward to some quiet days at home. She passed all of her tests, and although she was a little small, she went home on schedule.
We were home for a couple of days enjoying the parade of family and friends stopping by to meet Jude. In the midst of it, however, I received a call from Jody at the Community Health Clinic. She told me Jude had medium chain acyl-CoA dehydrogenase (MCAD) deficiency and proceeded to try to explain what it was and what we needed to do. All I heard, though, was that my baby had a very rare, potentially deadly condition that had shown up in her newborn bloodwork and that we needed to feed her every 2.5 hours until we were able to get in to meet with Dr. Ammous. It was terrifying and confusing. I had a million questions. But Jody told us not to worry about anything but feeding her. I said "we can do that" and avoided googling this condition I'd never heard of but had now taken over our world.
A week later, we were in Topeka, Indiana meeting with Dr. Ammous, Jody, and the rest of the Community Health Clinic team. They talked us through the condition, what it would mean for Jude and our family, and offered to connect us with other MCAD families. They gave us a glucometer, emergency protocols, glucose gels, and helped us plan what to look for and when to act. They coordinated with Jude's pediatrician and set up a schedule of nutritionist and specialist appointments for the coming year. And they gave us a direct cell number to text or call, any time. When we left, we breathed a sigh of relief. It was clear Jude was in the best hands possible.
Fast forward a year later and "The Fast and the Furious" is just that. She's trying to walk, caught up in weight, jibber-jabbering, and hitting all of the milestones she's supposed to. And we've made use of that cell number to reach Jody and team more times than we'd like to admit. They are always quick to respond and put us at ease. They take her condition seriously and our concerns matter to them. We've never experienced this level of care in the healthcare world, and I can't imagine entrusting our baby girl's health with any other team.