Liver Donation

My daughter who is 2 years old now was born with a very rare liver disorder known as Crigler Najjar syndrome stage 1. She had liver transplant last month. I as a father was the liver donor, both operations were carried out in Leeds at roughly same time which went successful, I was discharged from hospital a week later the operation, my child is still in hospital and is making good recovery. Hopefully she will be discharged in next couple of days.

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  • Pleased to hear your both doing well xx

  • wow I think that is fantastic. Very brave of you to under go such a big operation. I hope your feeling ok. Wonderful how they can take part of the liver now to donate. How is your daughter doing? Did she get very sick before the surgery or was it a matter of waiting until she was big enough to have it? I hope her recovery goes well and she is free of any complications in the future.

  • Hi Victoria, post operative recovery is very slow and boring, can't involve myself in much activity at moment, my daughter is still in hospital, she caught slight infection and is being treated with a/b otherwise she is having a gradual recovery. Since birth her unconjugated bilirubin level was so high that it could have led to severe brain damage. She has been kept on 12 - 16 hours phototherapy to suppress her bilirubin level. Now she had come to a stage where phototherapy was getting less effective. We were advised by the health professionals that liver transplant is the last resort and as her bilirubin level can creep up to danger level anytime she needs transplant sooner than later. As the closest match for liver donation, I decided to sacrifice myself to save my daughter's life. The surgeons also reassured me that now a days these operations have a good success rate and post operative recovery is good if we continue following their guidance

  • No, I imagine it hurts to move around too much--I've had 7 liver surgeries. i'm always learning with liver disease though I guess I would be if there are 200 of them--I have never heard of your daughters condition. That doesn't sound very nice for your daughter 12 to 16 hours of phototherapy sounds like she wouldn't be able to move around much ? I meet a lady once in the early 80's who had spent two years in hospital because her bilirubin was the highest they had come across, back than 400 whatever the measurement was.Her main bile duct had collapsed during gallbladder surgery. She spent a further year in hospital and than had to change hospitals as they were not getting the operation right. It did effect her mentally and she was a different person from the one I had met when I caught up with her 5 years later in the UK. They do live liver transplants here in New Zealand although I don't know how often it happens.

    I hope you continue to improve and hope your daughter recovers quickly from her infection and starts to have a more normal life in the future. I will check in in a few weeks to see how you both are.

    Vickie

  • Hi Vickie, hope you recover fully from liver problem and may not need any more surgeries, Areesha is recovering well from her infection, the hospital found the exact nature of infection and started her on the right set of a/b on time to which she is responding very well so far, they decided to keep her in hospital a week more for observation and reassurance but have kept the doors open for us for ever as and when there is any urgent medical attention required. Since transplant, she has not needed phototherapy at all as bilirubin is in normal range. She will be on lifetime anti rejection drugs which is a lot easier as compared to 16 hours of phototherapy.

  • I have written my history on one of those blog pages , as its very long and complicated. I think it is unusal to have 7 surgeries as even at Kings College Hospital in London I was introduced to students as 'this poor woman has had 7 liver surgeries' lol. I'm due another as the blog explains and I hope that is the last one at least for a few years as I need a break. Unfortunately due to complications from an earlier surgery I am in pain everyday and New Zealand is not a good place to have liver things and never has been really, I should qualify that by saying the team in Auckland are very good but we have community based care here in NZ since 2001 and that means it is very difficult to get into hospital and I think this has been part of the cause of my being ill for 17 years instead of maybe 18 months to three years as in other cases like mine around the world. previous to the liver transplant team, liver treatment grew very slowly and was dependant on NZers training overseas and coming back here with the right skills. Everyone over in Britain needs to make sure they know what the goverment are bringing in for the NHS and that people with rare diseases still get good treatment despite community based health care.

    I'll check in and see how you are in a few weeks. 16 hours of phototherapy is a lot for a little one.

    best wishes

    Vickie

  • Wow that's good to hear it went well

  • So heartening to hear that it has gone well so far for you all. My wife donated liver to my daughter at LGI in April this year - as a a man I was not a good match for a young baby girl. The outcome has been very good. We know how hard it is to go through all of this but also what a fantastic difference it can make. Our thoughts are with you and your family for the best possible outcome.

  • I am so pleased that both your surgries were a success. My husband donated his liver to my son. It is a very emotional time. Especially when child and husband are in surgery at the same time and icu. I was running between wards torn between the two. My husband who is no spring chicken had a good recovery. No driving or lifting for a while. I was amazed at his huge scar. He also had a bump on his head which no one could account for! Apart from indigestion and numbness around the scar he has been fine. Good luck with your recovery and your daughters quick return home.

    mum4yearold.

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