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Ubaid was born in May 2007 and complications during the birth set him off on the rocky path to needing a new liver and small bowel. His courageous parents tell us his story.
This is a picture of our beautiful son Ubaid Ali who died from Intestinal Failure Associated Liver Disease.
Due to a complicated and prolonged birth, Ubaid was born with the umbilical cord around his neck, which starved him of oxygen and severely damaged his bowel. At only 4 days old Ubaid under went surgery; the first of very many operations throughout his life. He was then diagnosed with NEC. The severity of it was explained to us and we knew very early on the future didn't look bright for Ubaid. But this was not as bad as what we were about to find out; Ubaid wasn't able to absorb anything therefore he needed something called TPN (total parental nutrition) — a drip which would be given to him intravenously for 16-hours-a-day, 7-days-a-week. This special drip was keeping our son alive but unfortunately this very same drip was causing Ubaid's liver to fail.
In December 2007 before his first ever discharge date there was discussions about the condition of Ubaid's liver. A Transplant Assessment was completed and a few weeks later Ubaid was placed on the waiting list for a small bowel and liver transplant. Given Ubaid's condition, doctors had said his life expectancy was approximately 6-9 months.
We took Ubaid home for the first time in February 2008 aged eight-and-half-months — not the average age to take your baby home for the first time. We were taking home our over grown baby. He was very well to begin with and we enjoyed 4 months at home with him without any hospital admissions. We thought we were on to a winner at this point and that maybe things could turn around for Ubaid.
As the weeks and months passed we would hope and pray that the transplant team would ring but that call never came, each day was like a ticking time bomb. We could check our call register even if the phone hadn't rung, clutching on to our phones hoping that it would make it ring, even taking it with us in the bathroom but there was nothing we could do to make it ring. At the end of each day we knew Ubaid's time was running out another day gone another day closer to his 9 months life expectancy.
18th August 2008 was Ubaid's final admission to the Birmingham Children's Hospital. Ubaid became very sick in a short space of time and doctors battled in vain to do all they could. After 10 days of doing all they could we were told they could do no more as Ubaid had come to his end stage liver disease therefore causing all of his organs to fail; liver, bowel, heart, kidneys and needing ventilation to support his breathing. We couldn't believe what we were hearing, we were loosing a little bit of our baby each day before our very own eyes and we couldn't do anything.
How different things would be if organs were available for him; he would have been here with us today enjoying life and doing normal things that all 15 months old do. Instead we were planning his funeral arrangements whilst he was being kept alive by machines in ITU, talking about burying our son whilst he was still breathing.
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