There but for the grace of God go I…..

A week after her discharge from Birmingham after her Kasai I took Hannah for her first (of many) blood tests at the phlebotomy clinic at Coventry and Warwickshire Hospital. One of the technicians noticed that Hannah had Biliary Atresia from her form. It turned out that one of the other ladies who worked there, named Jill, had a new granddaughter who was at that time being tested for Biliary Atresia, just a couple of weeks younger than Hannah. Jill came and chatted to us and told me she had gained comfort from seeing Hannah looking so well just a couple of weeks after her Kasai.

We were having weekly blood tests at that point, and I found out that this little girl did have BA and had undergone the Kasai, the surgical team from Birmingham having flown out to Belfast to perform the operation.

Every time Hannah has had a blood test there I have enquired about ‘Jill’s granddaughter’ and knew her Kasai had failed and she was waiting for a transplant. At our last visit on 3rd June I was told that the baby was very poorly, was in Birmingham and had needed to be ventilated.

I have thought about this little baby and her family constantly for the past 10 days, and said so many prayers for them. I was so surprised to see a post on CLASS last night about a baby from Northern Ireland called Erin who had got her liver after her parents were told she only had days to live. I am certain (after a little research and help from Angie) that Erin is ‘Jill’s granddaughter’, and I am filled with joy that she got her liver in time.

Erin is a couple of weeks younger than Hannah, her Kasai was performed by the same surgical team, at about the same age. What has made the difference? I guess the Lord has decided that this is not what we have to deal with at this time, and I thank Him for that from the bottom of my heart.

Many people do not seem to realise that Hannah’s post Kasai course has been fairly remarkable so far in its absence of complications and is not what we expected to happen. It is also easy (but not for me or Andy) to forget that her liver is still swollen, that her liver numbers might be good but are mostly still just within or outside the normal range and that portal hypertension is a strong possibility. I cannot help but feel that one day the ‘honeymoon’ must come to an end. I try to be optimistic and I do believe that Hannah can live a normal life without complications of liver disease and/or transplant. However I know the chances of that happening are very small, and try also to be realistic. Today I learned of a 31 year old with BA, who has been healthy until recently but now needs a transplant. This brings mixed emotions; on the one hand “We’ll never be free of this”, on the other, we would grab 31 complication free years with both hands and not let go.

In the meantime, I just give thanks to God that He has not decided to lead us down that path at this time, and pray for all those whom He has.