Jemima and Adebowale’s youngest child, Halima, was born on June 8th 2017. Eight weeks later she was diagnosed with the rare liver disease, biliary atresia which means her bile ducts were damaged and her liver was not functioning properly. Here Jemima tells their story.
At nine weeks old Halima underwent surgery known as the Kasai procedure to try to establish bile flow. Unfortunately we were informed straight away that it was unlikely to be successful as her liver was in a bad condition. After a few follow up appointments and various tests Halima was listed for a liver transplant. She has been in and out of hospital since, sometimes for weeks at a time. Because she was not taking her feeds and therefore losing weight she was fitted with an NG feeding tube in November. Since then she has slowly put on weight and is doing much better. We are hoping that Halima’s father will be able to be her live donor and are still awaiting for his final appointment with the consultant.
I first heard about CLDF from the staff at King’s College Hospital after Halima’s Kasai surgery. However, my head was all over the place at that time and I thought no more of it. Then when Halima was listed for transplant, the transplant coordinator at King’s advised me to contact CLDF, she explained a little about who they were and what they did.
When I called CLDF myself I spoke to a member of their team who was just amazing. I felt so comfortable talking to her as I felt she cared and was interested in what I had to say, and answered all the questions I asked. I even told her about my own medical condition. So as well as sending me information about CLDF, and biliary atresia, she also included information about sclerosing cholangitis for me.
After going on the website, and reading up about CLDF I was definitely intrigued to go to one of their events. Prior to Halima being diagnosed we’d never heard of biliary atresia or anything to do with liver transplant. And although family and friends have been great, they don’t really understand what we are going through. We wanted to meet other families in similar situations. Fortunately there was an event coming up which was near us in London so we all went along.
We really enjoyed the day because everyone was very friendly and willing to share their stories which were all amazing to hear. It was just an eye opener for us to see and hear so many experiences. Adebowale was lucky enough to meet a mother who had donated part of her liver to her son so was able to answer some of his questions. The whole atmosphere made it easy to approach other families which we’d never been able to do before. Although like Halima, some of the children had not had happy beginnings, it was lovely to see so many children thriving and doing so well.
We are definitely going to keep in touch with the CLDF team and with some of the families we met that day. They have given us hope for Halima’s future.
Have you been inspired to share your own story? Click here to get in touch