Baislee, Age 11 months

Location: Texas, United States

Challenges:Since birth, Baislee has not been able to eat enough to grow. Now that she is exploring pureed foods, she will only eat sweet potatoes and butternut squash. She gags on everything else. She is also unable to tolerate medications by mouth. Baislee has a g-tube.

Formal PFD Diagnosis: Yes

Age of Formal PFD Diagnosis: 6 Months

Type of Insurance: Thankfully we now have United Health Care. But she just got UHC in August of this year. Prior to, she had Community Health Choice from the Marketplace and Marketplace insurance covers almost nothing.

Percent of monthly budget that goes to feeding difficulties: About 25%

Does insurance cover any / all medical costs? Insurance does not cover any medical costs. Not the ones that would help her to eat in a more typical way. They are only covering cost to continue to feed her via g-tube.

Summary

From birth, Baislee was experiencing feeding difficulties. She was born at 36 weeks and 5 days. So she shouldn’t have had difficulties. I remember the nurses and doctors telling me that sometimes babies need a little more time and that one day it is just going to “click.” They kept comparing her to other babies, but my momma gut knew something was wrong and that it wasn’t just going to “click.” If it weren’t for me pushing her team in the NICU, I am convinced we would still be there today waiting for her to “click” and finish a bottle. She was finally released at 4 weeks, she was eating just enough at that time for discharge, but about every 3rd day she wouldn’t eat much at all. She never increased how much she would eat per bottle so she eventually started losing weight. I searched high and low for a feeding therapist. Most had waiting list, but none of them took our insurance. It was devastating, because I knew my daughter could do it, we just needed a professional that was experienced and only focused on feeding. We finally found a feeding therapist that has been a godsend for our daughter. Had we found her sooner, I believe my daughter could have avoided the g-tube. In between all the madness, we had her checked by every professional. She had different procedures and recommendations that all worked for a short period of time, but her amount per feed always went back down.

What having coverage could mean

Coverage would mean everything for our family. I would be able to save time from searching high and low for services and then save the time it takes to talk to insurance companies and the doctor's office, and the DME company, and all the different people you need to talk to to get our daughter the bare minimum of addressing this issue. The effort and advocacay it takes to get practitioners to take you seriously and then to collaborate with each other is more than a full time job. It's exhausting, disheartening, and feels almost impossible sometimes. Our daughter being able to share a meal together with her sister who is 1 year older than her is now our dream. Coverage would help us achieve that dream.