Childhood liver transplant: the transplant 

In this first episode of a video series about childhood liver transplant, five adults talk about why they received liver transplants and their memories of the procedure.

Also read Shohanna's story

Transcript of Childhood liver transplant: the transplant

CHILDHOOD LIVER TRANSPLANTEPISODE 1: THE TRANSPLANT Gemma was born with biliary atresia.She was diagnosed at eight weeks. Had a kasai procedure operationat nine weeks, which was unsuccessful. And, at that time, we were told that there really wasn't anything elsein this country and we'd be lucky if we still had herwhen she was two. I was born with auto-immune chronic active hepatitis,apparently. So that was the basic reasonbehind my transplant. Well, when I was born I was diagnosedwith a condition called biliary atresia. Biliary atresia means the obliteration, it's quite dramatic,or blockage of the bile ducts. And basically, I needed a transplant. They gave me a transplant, they managedto successfully find me a liver, but the problem with that liver is that there were blockages around theblood vessels which went into the liver. And that basically suffocatedmy second liver. So I needed another transplant,which is the one I've had ever since. So I've had two transplants. I was diagnosed with a form ofcirrhosis of the liver when I was two. I went on to have my first livertransplant in '94 when I was eight. Unfortunately, I believeI contracted auto-immune hepatitis, so I then went on to havea second liver transplant in 1998. I was born with a metabolic disease. Which was picked up by chance by my GP in a routine check-upwhen I was two years old. He felt that my liverwas slightly enlarged, so he sent me to King's College Hospitaljust to be safe. After various tests, they actually foundthat I had cirrhosis of the liver. They didn't know why I was born with it,I just was. And, worryingly,it was becoming cancerous, so I was put on the transplant list. I was six months oldfor my first transplant. And seven months and one day oldfor my second transplant. She had the transplant in Pittsburgh. When we first went over,she had to be evaluated, so she spent three days in the hospitalhaving lots of different checks. We waited five months for a donor. I didn't have jaundice. I was still very energetic. So it didn't actually look likeI was really ill. When I actually had the transplant,I was eight years old. I remember little patches. I actually remembersitting in the ward in London and food being nearly readyin the evening, and just as I was waiting for that, a doctor coming over to talk to myselfand my mum. I remember that quite welland him essentially saying, "Frank, we thought we'd basicallytry and make you well again and give you a new liver,"or something in those terms. I remember it partly wellbecause it seemed like no big deal. At that age,you don't really have a concept of quite how significant that would be. And I remember thinking,"Yes, fine, that sounds good." "When's dinner?What's on TV this evening?" And really it just being... ..of nothing of huge concern to meat that age. No doubt it was much more sofor my parents. Apparently, when I had hadan awful lot of morphine, I think, I spent the whole night ripping postersdown off the hospital walls. I've watched videos from when I wasyounger, seen newspaper clippings. Kind of heard from various familymembers how it was for them, really, but, for me, I don't remember anything. I'm kind of pleasedthat I don't, actually. Gemma was 23 monthswhen she had the first one, and the second onewas nine months later. She was very young. She was in hospitalfor two months after the transplant. Up and down with rejectionand lots of different problems. But she was released after two monthsand we came home two months later. But when we came home,she was in chronic rejection. And they just hoped thatthat may subside, or may have kept goingfor several years. But actually it just kept goingfor another few months, so we had to go back to the Statesfor a second transplant. My mum always prepared methat I'd need another transplant. She knew that the first onedidn't really take. So it was kind of an unwritten... an unsaid rule, I guess,that I would need another one. I remember being called intothe doctor's office and them telling meI'd need a transplant. They were going to put me on the list.I didn't really know what to say. They asked me what I was worried about. The only concern I had wasI didn't want staples because they really hurtto have them out. I think, what was the other thing?It was something to do with cannulas. I just hate cannulas. I think it was... Please, can they put me underwith the gas and then do the cannulato completely knock me out. That was the only worry.At that time I didn't think about it. Then me and my mum left the officeand had a cry and rung my dad and then I guess it really hit. Being that age,you're so naive to it all. It didn't really feel as big, I suppose. FOR MORE INFORMATION AND TO SEETHE REST OF THE SERIES VISIT: www.nhs.uk/childhoodlivertransplant

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Childhood liver transplant: Real stories

Five personal accounts of growing up after a childhood liver transplant

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