Hadyn, Age 13

Summary

Hadyn was born with a chromosome disorder called 18Q Deletion. With this diagnosis comes many challenges but feeding was always the most difficult for me. Breastfeeding was impossible and it took an hour to bottle feed Hadyn 8 ounces. My days were spent pumping every 2 hours and attempting to feed him every 3 hours. The lack of sleep and level of stress was overwhelming. After 9 months of having our pediatrician and my mother (retired nurse) recommend a feeding tube, we reached out to Feeding Matters (P.O.P.S.I.C.L.E. at the time) where I was able to talk to other parents on their forum. Hearing about their experience with ng tubes and g-tubes helped me make the decision to place a tube. Weekly feeding therapy began and for the next several years, our life was a balancing act of figuring out how much to tube feed, how to get more calories in, and wean him off the tube. My days were consumed with counting calories, keeping food journals, and weighing Hadyn. If he ate great one day, I was a good mom. The following day when he wouldn't eat or would vomit, I was a failure. The pivotal moment for our feeding journey was when I stopped stressing about if he was going to eat, started listening to his cues and my gut, and realized that his g-tube was only a tool to help him get the nutrients he needed. This allowed him time to learn the skills necessary to safely chew and swallow age appropriate foods. Looking back on our journey, I feel fortunate that we had Feeding Matters. The support and education they offered was invaluable and still is today. I am incredibly proud of the fact that Hadyn eats all his meals orally and enjoys mealtimes. While he may never be able to eat a salad or chow down a meal in under 5 minutes, our time at the table is enjoyable and that's everything.

What having coverage could mean

We have been fortunate with Hadyn's insurance covering feeding therapy and feeding tube supplies. It's unfortunate that many insurance companies do not cover evaluations or intensive feeding programs. When we finally got Hadyn in for an evaluation for an intensive feeding program and got on the schedule, insurance denied it. After appealing multiple times, numerous phone calls, collecting data and research, and, as a final plea, scheduled a hearing in court, we got approved. The phone call came the day before our scheduling hearing. I think if insurance companies knew the complexities of PFD and the extreme measures parents take to feed their child, and considered the long term healthcare costs of PFD untreated, it would change the outcome for the child and families struggling with PFD. Parents would no longer have the added burden of having to fight for coverage and the out of pocket expenses that can cripple a family financially.