To help raise awareness in Organ Donation Week 2017, Jane kindly shared her daughter's story...
My daughter Naomi was born on 12th October 1992. She was extremely jaundiced and this did not clear. She also seemed to be constantly hungry. Our G.P. examined her when she was around 3 weeks old and thought that he could feel that her liver was enlarged. He sent us for tests which culminated in a liver biopsy at Leeds General Infirmary after which she was diagnosed with biliary atresia. As we already had a healthy 21 month old son, Oliver, this was a massive shock. There were no printed information sheets available then so one of the ward sisters drew diagrams for us to help us understand. It is so different now, thankfully.
Naomi underwent a Kasai procedure on 23rd November 1992 but it was relatively soon after this that it became evident that although her condition had improved, she would need a liver transplant at some point in the future.
After a nasty prolonged bout of Cholangitis Naomi stopped feeding and we then had to learn to pass a naso-gastric tube for her to be fed by pump overnight at home. Our home came to resemble a hospital with medical supplies everywhere. This didn't stop her though, she played alongside her brother and always had a smile on her face.
When Naomi was around a year old she started to become severely anaemic, caused by varicose veins bleeding internally. This was a sign that her little body was coming under increased pressure from the build-up of fluid around her failing liver. Every week she had to go to Leeds for a blood transfusion, including on the day of her 1st birthday.
A liver transplant was quickly becoming inevitable and Naomi went into St James's in Leeds for a transplant assessment. Half way through this it was discovered that Naomi's portal vein was very narrow so it would be too tricky for the transplant to be done in Leeds. Naomi was transferred to Birmingham Children's Hospital for her assessment. She was by now 13 months old.
At the assessment we were told that Naomi would be put on the urgent transplant list as without it the doctors felt she would only survive for another 6 to 12 months.
Naomi eventually joined the list in December 1993. We carried on as normal for the next couple of months until we got a phone call on the evening of 23rd February 1994 saying that a liver was available (actually a part of an adult liver).
We drove down to Birmingham from East Yorkshire in thick snow and arrived at the hospital at around 3 in the morning. Naomi had to have a chest x-ray and a blood test to make sure she was fit for the operation then at 8.30 on the morning of the 24th she went into theatre. She was there for the next 7 and a half hours - the longest of our lives.
Naomi in ICU post transplant
Naomi was in hospital for 16 days, in which time she went from strength to strength. She looked fantastic and as a result of the steroid medication, she had a huge appetite and never needed the naso-gastric tube again. I can remember laughing as she devoured a bowl of baked beans. She had never really eaten solid food before.
Naomi's life from then on was pretty normal, which obviously is the whole point of transplantation although at age 5 just after starting school she developed Auto Immune Hepatitis. This is a lifelong condition managed by medication. In addition to this she has recently been found to be steroid deficient, she has to carry an emergency injection around with her and this can be extremely risky especially if she is unwell or under stress. Then to top it all she has been diagnosed with Epstein Barr Virus or the glandular fever virus which has put her immune system under a lot of pressure.
Despite all of these problems, Naomi continues to smile her way through it all. She has countless medals from going to the British Transplant Games and has represented Great Britain at 3 World Transplant Games winning gold and silver medals at all three games. She got great GCSE results and went on to complete an Extended Diploma in Sport at college.
Naomi today at 24 years old
Now nearing her 25th birthday, Naomi is on a management apprenticeship with Aldi and shares a house with a friend, so she is completely independent. Next year will be the 24th anniversary of her liver transplant and not a day goes by that I don't thank her donor and their family for my daughter's quality of life.
A few words now can make an extraordinary difference. Tell your family how you feel about organ donation this Organ Donation Week. Find out more on the NHS Organ Donation website.