My daughter had a live liver donation... - Children's Liver ...
My daughter had a live liver donation from my wife this year. Would love to hear from others how this has worked for their family?
Hi, My Husband was a living donor to my son. My son is now 4 years old he had a liver transplant at 10mths. So far there has been no signs of rejection. The first two years after transplant we were in and out of hospital. Now things have quietened down a little. My husband worked from home after the surgery. No lifting or driving for 3 months. He still has a small amount of numbness around the scar but otherwise fine.
I hope that you are all well. When was your surgery?
mum4yearold
Claire and India had their live donor ops on April 27 this year. India was also 10 months - snap! Claire has recovered really well. India has had some complications, initially a bile leak of the bile duct and since mainly narrowing of bile duct and portal vein but nothing that has been a significant threat to the transplant. We still feel very much in the hospital loop - 2 weeks is the longest we've gone without an appointment for some reason or other and we've been back to Leeds at least monthly. Sounds like you had a similar experience. India's LFTs are very good and that's probably as promising an indication as we can have. Good to hear that your son's situation has gradually improved - at times you wonder if you'll ever feel like things have settled down.
I feel the same. We had our transplant at Kings in London on the 6th of Dec 08. We made it out Christmas Eve barely.My son had spiked a temp so they wanted to keep him in. At the time i had a two year old at home waiting for Santa. So they agreed to let us home and liase with our local hospital for anti biotics three time a day. In theory that sounds fine but when i had to be in our local hospital for an 8am/3pm/10pm dose it proved to be exhausting. Putting a child post transplant in and out of car seats and buggy in the cold. You do what you have to. He was nasal gastric fed for the first year. We had bloods done every three weeks for two years post trasplant. I have every ALT and the rest recorded. The nurses became my best friends.
He is four now and he is still a worry. A broken arm four mths after transplant. they said his bones were probaly week from all the treatment he had in the first year from ascites.Stitches in his head after a nasty fall. Bit the top of his tongue off and this year broke his collar bone at school. so he is a constant worry. His liver is fine now. He has been getting a lot of cold sores. I know their immune system is week so they frown upon the Herpes virus. So it has been a stressfull year. We thankfully had him immunised againist the chicken pox. I think your life changes and you just have to manage it best you can. Living on the wards exposes you to a much larger picture of what life could be.
All of that sounds very familiar. You lose track of the detail. India too fractured her arm soon after transplant because of Vitamin D deficiency. You are right about hospital though, it's like a dingy side room to the real world. There are families that seem to be there every time we are and we can only be grateful that we have spent much more time visiting than we have 'living' there. The centre of excellence model is a double-edged sword. The standard of care at Leeds is very good but you don't thank them for it when you face a 2-day 400-mile round trip for an ultrasound that can't be done locally! Have your employer(s) been supportive?
OMG. that is huge. I am surprised they are not more accommodating. We met a Greek family who were in the bed beside my son.We are still in touch. Their little man is one month younger than our son and had the same condition. They fly in once a year for their check up. Otherwise their local hospital looks after them. We were on a multi cultural ward. I think they all at some time or other have to make the journey in to meet the consultants and have the ultra sound. We are very lucky we live 2 hrs from Kings in London.
Interesting that your daughter also broke her arm. What i would say is we found that because my son was so sick for his first year his development was delayed. His motor skills, speech and language needed extra help. It takes a while to get into the system. So i started when he was 2. Our local consultant sees him every 6 mths and through her we were able to get appointments with OT's and speech and language therapists. They predict he is 6 mths behind in his development. He looks so well and healthy due to steroids and 10 meds a day and a great formula he had as a baby. However his fingers are not strong and his balance was as if he was on a boat. I am a stay at home mum so i can bring him to apts and push for him to have what he needs.
Sorry my response is not related to transplant however am very interested in the broken bones aspect and development. My son is 5 yrs old and has Alpha 1 anti tryin deficiency. He was diagnosed at 4 months old and was v poorly at the time. He's doing really well now though and apart from his meds he looks like any normal, happy, hyper 5 yr old. However, he has broke his arm and his foot. His arm he fell from a trampoline so understandable but his foot he just jumped on some concrete from a couple of inches up. He's also behind with his motor skills, I.e writing at school, holding his pencil properly etc is also VERY clumsy, continuously falling over, bumping in to things etc, we are currently awaiting an appointment for a co-ordination specialist. Is very interesting others have experienced the same but are yours all post transplant? Are they connected to liver conditions??
Natalie xx
my daughter is going in for transplant jan 22nd, shes at BCH, shes getting the liver from me (her dad) she will be 13months old when shes transplanted. She suffers with biliary atresia, its great to hear so many positives about live liver transplants!!
Hello! I gave part of my liver to my 5 year old son this summer- I'm his mummy. We're both doing well but he is absolutely transformed! Having had 5 years of slow and steady deterioration due to biliary atresia, and a cancelled op in early July, we didn't think there was a hurry but at the end of July his liver failed and he was gravely ill so we did the transplant as an emergency. Hope it goes well for you both. The incentive to get better and visit the child takes your mind off the unpleasantness and discomfort of the post operative period. Keep in touch- always happy to have a chat.
I gave to my boy (aged 5) this summer- I'm mummy- he's transformed and I've done fine, too!
