Sunaina’s mother shares her story about waiting for a liver donor.
Sunaina was born 31 years ago in early July in Birmingham. I call her Snay – her siblings and younger cousins call her Didi as she is the eldest of their generation. At birth doctors confirmed that Snay has a rare disease of the liver and bile ducts called Biliary Atresia. In simple terms, the liver produces bile which helps to digest fat, carry waste products out to the intestines. When a baby has bilary atresia, bile flow out of the liver is blocked. The trapped bile quickly causes damage and scarring of the liver cells (cirrhosis) and eventually liver failure.
At 7 weeks old Snay had reconstructive surgery called the Kasai procedure to establish bile flow from the liver to the intestines. The Kasai procedure is not a cure but it allows babies to grow and have fairly good health for several and sometimes many years. Long term anti-biotic therapy is necessary to reduce the risk of life-threatening infection. We were therefore, aware early on that at some stage in Snay’s life she would require a liver transplant.
THAT DAY HAS COME
Over the last eight weeks Sunaina’s condition has deteriorated considerably. Specialists have prioritised her position on the liver transplant list to ‘super urgent’.
Last month, the specialist team made the situation very clear to us. Sunaina, has a rare blood group (B). 25% of people with this blood group are from the black community and 20% from the South Asian community. Only 2% of this population, however, are actual organ donors. The low availability of compatible donors from this blood group means patients have lost their lives whilst waiting on the transplant list.
Sunaina has spent most of June and July including her 31st birthday in the hospital. At this stage she is on the last line of defence antibiotic to keep the infection at bay which is most effective when administered intravenously. Her body has over the years become immune. In addition, she is on the highest strength of medication to manage excruciating surges of pain.
Our aim in telling Sunaina’s story is to raise awareness of the low percentage of organ donations for this rare blood group (B) and particularly in the black, asian and minority ethnic (BAME) community.
Our lives hang on the generosity of a stranger. We hope to encourage more people to sign up as organ donors and in doing so give hope to young adults like Snay that they have a chance to live.