Hmmm Having trouble with that link! I think you have to be a member to see that page. If you have a child with liver disease and dowant to become a member start at http://www.classkids.org
For those of you who haven't seen it, here it is:
Molly was born in Haywards Heath, West Sussex, UK in May 2003 by c-section (planned). She had an apgar score of 9 across the board and was a great 7lb, 13oz - a very content little dark-haired baby.
Molly became slightly jaundiced on day 2 and by day 5 was pretty orange! It turned out she had ABO incompatibility, which I cursed at the time. So she had intensive therapy and a spell in SCBU on a drip for fluids.
On day 9 we were sent home with her bili levels coming down nicely. Our consultant was continuing to monitor her, but the consensus was that Molly had "sludging" of old blood cells clogging up her system, remnants from the ABO problem. However, her bili levels were changing and the "conjugated" part was being stubborn. Her stools were pale, but this was only picked up by me and not brought to their attention early enough.
One week later, the levels did not come down at all so on the following Monday we went up to Kings College Hospital in London for a good investigation. It was pretty clear from the outset that they suspected biliary atresia even though Molly was hardly jaundiced and had not lost weight at all. They even gave us the paperwork! We returned the next day for a liver biopsy. The results came through on the Thursday and we went up on Saturday.
Molly had her Kasai on the next Monday. The operation took 6½ hours and, although I thought we would be nervous wrecks, it was more of a relief to get it done - it was, after all, the only option. When we spoke to the surgeon, Mr. Davenport, it seems that she had classic biliary atresia - her gall bladder was a little lump rather than a bag and her bile duct system was shriveled. However, there was only minor damage to the liver, "nothing irretrievable" were his words. We were really happy - in fact I was ecstatic! It was the outcome I didn't dare hope for.
Molly recovered amazingly well, with no setbacks, and we came home the following Tuesday. She started regaining weight well although she was a little reluctant to finish her feeds, so we came back with an NG tube to "top her up." It became very useful for her medicines that she hated so much. The tube came out that weekend.
We had a check-up 1 months post Kasai and Molly's billi levels were at 87 and she was still visibly yellowish. I know the way these units are measured differs here in the UK. She was 168 at the time of the op and Mr. Davenport, the surgeon, says that children whose levels are around 20-30 do really well with their own livers. We go for our next check up in November, which will be 6 months post Kasai, and we hope that her levels will have settled by then. The surgeon was extremely happy with her and since then she is nearly always "pink" and her nappies are looking pretty normal most of the time. Fingers crossed for good levels in November!
She continues to do really well and is putting on weight steadily. She is a little below weight, but not much. She just needs to regain the weight she lost when she had the op (going nil by mouth tends to do that!).
Molly is currently getting over chickenpox - which she has taken in her stride. She is a really happy little girl and my other daughter, (Daisy age 4) absolutely adores her. Molly very rarely cries and although she doesn't sleep through the night she feeds quickly, winds, and goes back to sleep without any fuss - 10 minutes max!! I think I can cope with that........
Reading this it seems amazing that it was almost 4 years ago! Molly has her 4th birthday in just a few weeks. The "coping no sleep" makes me laugh - that no sleep lasted 3 years!!!! And yes, I coped, but it was getting pretty desperate!!
And I am SO glad she got chickenpox. I couldn't have realised how important it was, but if she HADNT caught it before transplant we would have been in a more precarious situation. Her antibodies are strong and she has come through two major chickenpox outbreaks with no sign of spots. Fingers crossed she continues to do so and doesn't ever develop it again, otherwise its straight into hospital and we have avoided that for.... over a year!!!!!
