12th July 2019
As we launch our updated Good Practice Points on Babies who have neonatal jaundice, we are delighted to share this guest blog by Kelly-Anne on her daughter’s baby jaundice, to help explain the importance of recognising baby jaundice early enough. Many thanks to Kelly-Anne Robinson (Sienna’s mum), Alex Lean (Sienna’s dad) and of course Sienna.
I am really pleased to be able to support the Institute of Health Visiting and the Children’s Liver Disease Foundation to launch their Good Practice Points for health visitors on “Babies who have neonatal jaundice”. Hopefully by sharing my story it will help reduce the harm caused by liver disease and raise awareness of the importance of taking baby jaundice seriously and not assuming everything is normal – for a small number of children every year, baby jaundice is a sign of a serious liver disease. I am very proud of my daughter Sienna and the way she has coped with so much in her short life and now want to do all I can to help others in the same situation.
During my pregnancy there was no hint that there were any problems with Sienna – all my tests and scans came back as normal. At 38 weeks, during a check-up with the midwife, she sent for an ambulance and I was rushed to hospital with pre-eclampsia which led to an emergency C-Section.
Sienna seemed to be a perfectly normal baby, she was a bit jaundiced and the medical staff seemed a bit worried because she had very pale stools. After a few days the jaundice was getting worse and a UV lamp was used. It soon became apparent that her colour was getting no better and that there was a more serious underlying cause. In many ways we were lucky that this was spotted so early by the medical team. As a new mum I didn’t know anything about liver disease and Sienna looked perfectly healthy to me.
Discussions with the liver ward at Birmingham children’s hospital led to more bloods and tests being carried out. As a result, Biliary Atresia was diagnosed and Sienna was transferred to Birmingham Children’s Hospital. At approximately 4 weeks old Sienna underwent an operation called the Kasai procedure to enable a bile duct to be fashioned. This appeared to be working and her colour improved dramatically as did her conjugated bilirubin level which was down to almost twenty. Unfortunately, the correction then started to fail and Sienna’s bilirubin count went up and she became yellow again. As a complication of liver disease, Sienna also developed brittle bones which resulted in her sustaining many fractures some needing casts and a gallows traction. Sienna was becoming very unwell and it was decided by the medical team that a liver transplant was the only option.
Many friends and family volunteered to be donors and Alex her dad was chosen as the best match. Unfortunately, a few days before the operation we were informed that Alex had an enlarged heart and would be at risk himself and so the operation was called off. By this time the doctors were being very straight with us and said that if Sienna did not find a matched donor within a week she would be removed from the transplant list as the chances of a transplant being successful was now very low. Much to our relief, on day 6 of our wait, due to the untimely death of a young woman a suitable liver was obtained.
Sienna was now 11 months old and underwent an eleven-hour operation and the left lobe of the donor liver was successfully transplanted. Within hours, Sienna’s fingers and hands were becoming a normal pink colour. Sienna was in ICU for approximately four weeks then in the ward for many more, and she has made a remarkable recovery. We still have regular checks and bloods taken. We check her stools for a pale colour and also check her regularly for cold sores which are an indication of the herpes virus. If Sienna does pick up an infection or illness, then she goes to Leighton where she has intravenous drips of antibiotics. She still relies on anti-rejection drugs which she takes once in the morning and once at night. Also once a year she visits Birmingham Children’s Hospital for a full health check including liver biopsies.
However, to all intents and purposes Sienna now leads a normal and very active life. She attends school and joins in with everything including all the physical activities. In fact nothing holds Sienna back.
Kelly-Anne Robinson (Sienna’s mum)