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.

My babies are growing up

This evening Andy and I went to a ‘Parents Information Evening’ for the nursery class Caitlin is starting in September. This time next year we will be preparing for school. Where is the time going??? Bring it back! Isn’t it only a month or two ago that she was a pink dot on a pregnancy test (we did two to make sure), a growing bump, grinding her head against my pelvis in the last weeks of pregnancy? A few weeks since we learned about breastfeeding, nappies, baths, and unconditional love together? Surely it was only last week that she first said ‘Mama’ and toddled her first few steps? And only yesterday that she first met her baby sister? I think it must always feel like that. Where did this grown up person come from? Where did my baby go?

Talking of baby sister, my tiny yellow sick baby also seems only a heartbeat away, but at the same time a million miles. Every day she gets closer to being a little girl and further from being a baby. She crawls on hands and knees now, can pull herself up to kneeling and can sit herself back up. She babbles and smiles and laughs and squeals. Soon she too will be walking and talking and ‘Baby Hannah’ will be gone forever, just like ‘Baby Caitlin’.

I suppose that is what it is like to be a parent. Every day is a mixture of joy and sadness for today, hope and fear for tomorrow and nostalgia for the past. I want to try harder to enjoy each day for what it is, and not become so weighed down by trivial things. I wish I could capture the essence of certain moments, but I can’t, so all I can do is try to focus on the miracles that happen around me every day and allow myself to wonder at them, and spend less time worrying about the laundry.

The cat that got the cream...

I feel like a little girl at Christmas – I have new toys!!

On Saturday my new laptop finally arrived. It seems strange that after so many years of using computers, I have never had one of my own before(unless you count my Spectrum 128!). Now I can use the PC during the evenings and stop wasting time on it during the day! I have been very good so far and have been leaving it switched off all day. I haven’t used Andy’s PC either – feeling very self disciplined!!

I am looking forward to starting some of my planned projects – the family website, a UK Biliary Atresia discussion forum, getting myself better organised, being able to keep up with my emails, post more blogs……being a laptop I might also get back into watching Eastenders!

Today I went to purchase my second toy. Anyone who knows me well will have heard in minute detail of my search for the perfect solution in transporting the girls without getting in the car. After months of deliberation and research my new friend is the ‘Nipper Double’ pushchair! It’s light! It’s easy to push! The girls have enough room! The ride is smooth! I love it! (It doesn’t fit through the front door, but who cares, we’ll go round the back or fold it up.)

I can’t wait to go for lots of lovely long walks and plan to take full advantage of the lovely weather forecast for the next few days.

I’m feeling very lucky to have two things which will make so much difference to my life.

First post from my new laptop!

At last - I have my own computer for the first time ever! (apart from my Spectrum 128 - does that count?) No more waiting for Andy to go to pool before I can blog! I am tired now as I have been catching up on my email, but I will definitely be posting much more often from now on. I love my new computer!!!!!

The Gift of Life

Views on Organ Donation

I decided to post the following message on babyworld today:

Almost half of those who are asked to consent to donating their relative’s organs refuse.

Would you be an organ donor, or give consent for your relative’s organs to be donated?

How many of you have signed up to the NHS organ donor register?

Is it right that relatives have the final say, even if they are knowingly going against the wishes of the deceased person?

I have always wanted to donate my organs, and would also donate my husband’s or children’s should I be in that unfortunate position.

I feel this is a topic that families should discuss so that relatives are not trying to make a decision at a time of extreme trauma – I am sure this contributes to the high refusal rate.

I was interested in particular to find out what reasons people might have for objecting to donating their organs. I have always thought I would want to be an organ donor, long before we entered the world of biliary atresia and liver transplants. Why are there so few donors? Less than a fifth of the UK population are signed up to the NHS Organ Donor Register.

Well, I didn’t really find the answers I was looking for, and although I got a lot of replies to my post, it is now being bumped further down the thread, so I don’t think I will…..

The majority of respondents said that they were either signed up to the register or that they would be willing to be donors. I noticed that some of the people that seem to have an opinion on every topic did NOT post – I wonder if they are not willing to be donors but do not feel they can justify why.

A few people responded to say that although they wished to be donors, their husband or partner was completely against it and perhaps would not carry out their wishes. I am absolutely appalled by this and I believe that the deceased person’s wishes should be final. If someone has signed up to the register then that should not be overridden by their relatives.

The need for consent from next of kin also places a difficult yet crucial decision upon the most recently bereaved – not a group of people capable of the most rational thought, in my opinion. This decision should be made away from such a stressful situation.

I would go further than this and say you should need to ‘opt out’ rather than ‘opt in’, i.e. your organs would be donated unless you expressly stated you did NOT wish this to happen. If anyone feels strongly enough against donation they would do this. It would also mean that some people would really think about why they did not wish to donate, rather than being apathetic about it.

Only two respondents said they would definitely not donate their organs. I did not start this discussion to attack people, rather to gather information, so I did not criticise or closely question either of them. One of them did not give any reason for their unwillingness, but the other response really disturbed and upset me.

This person was anti-donation because her father had died while waiting for a heart transplant. Yes, you did read that correctly. Her posts were short, just a few lines, but my impression of her stance was “No-one wanted to donate the heart my dad needed, so I don’t want to donate to anyone else.” She did actually call herself selfish. She also said that she would not be willing for her children to be recipients of human organs. When I asked if this was because she did not want to go through the whole, awful waiting process, possibly for nothing, she said that this was part of the reason.

I don’t know how recent her bereavement was, but it came across that her feelings were still very raw. I am not trying to judge or criticise her here. I do not know the full story and I have not walked in her shoes. I am just shocked by her reaction. I just assumed that anyone who had suffered bereavement because of the lack of donors would be completely pro-donation and would never want anyone else to have to go through the same thing. I prayed that I would never have to experience such bitterness in my heart.

I knew when I started the thread that it would not be easy to read people’s responses in some cases, and I was right. The other really frightening aspect was that there were several people who were pro-donation, yet did not feel they would be able to donate their children’s organs. At least adult livers can be cut down – what about children waiting for hearts, kidneys, lungs, liver and bowel………

I feel the need to do something, to do my bit to increase the number of donors, but as yet I’m not sure what……..this could be a VERY long term project!

If you are reading, and are not registered as an organ donor, PLEASE take a few moments to do so now. In the UK, you just need to fill in your details on the UK Transplant Website.