After my wife’s complicated pregnancy, which resulted in a hospitalization, emergency
Cerclage at 22 weeks and bed rest for almost 5 months our daughter Akira was born.
Although she made it to full term, when she came home she cried uncontrollably for 8
weeks. During that time we found out she had a milk protein allergy and thought we
solved her problem. However, despite changing her formula she continued to scream and
cry all day and had significant difficulty feeding. She was found to aspirate (unable to
swallow) and had severe GERD (Gastro Esophogeal Reflux Disease). As a result she had
to have a feeding tube placed and was on a regimen of medications to control her reflux
for several months.
However during those months she progressively got worse choking in the middle of the
night and progressed to choking through out the day. As a result she was hospitalized
and we found out her reflux was so severe her stomach contents were ending up in her
lungs. As a result we had to have an immediate Nissen Fundoplication performed.
Although, we thought this surgery would solve her reflux issue, in the days following her
surgery she suffered a GI bleed and could no longer tolerate food in her stomach. She
eventually came home on a GJ tube, which fed her directly to her intestine. Fortunately
in the past 2 months we have been able to progress her back to feeding through her
stomach and she continues to grow and is now taking a few steps.
Despite the best efforts on the part of the physicians who have worked with her and the
mountains of tests that have been performed we still do not know why her reflux was so
severe or why she continues to be unable to swallow.
In addition to the issues surrounding my daughter my wife has had minimal work over
the past year as she has had to care for our daughter and I also had to take time off
of work to care for my daughter. As a result we fell behind on our bills and were at
risk of being unable to pay for our home and utility bills. Although, we applied for
assistance for our daughter’s medical bills/care through state and government programs
we were continuously denied. Thankfully the Reliance Foundation was there to help us.
Although we are still trying to play catch up we are able to provide our daughter with
the medical care she needs and we have been able to thanks to the help of the Reliance