How do you cope with your child being... - Children's Liver ...
How do you cope with your child being on the transplant list
Hi there
My son was on the transplant list back in Feb/March of this year. I remember feeling completely and utterly sick when we got the phone call to say he was definitely on the list. You are told to carry on as much as normal but I don't think we ventured more than 5 miles away from the house for fear of not being about to get to the hospital by ambulance. He's under King's College in London and the thought of getting there under our own steam at a time when we knew it would be really stressful just filled me with fear.
In the end my son was in hospital recovering from an infection when a donor liver became available so we never had the phone call or the mad dash. But, my only advice would be make sure you have a plan in place for when the call comes. If you have other children make sure there's someone who can look after them at the drop of a hat. If the child on the transplant list is of school age make the school aware that at anytime you might call to come and get him/her and that you need them to be ready when you arrive.
It's not an easy time because you don't want to be in that situation in the first place, but we knew it was his only hope and it that respect when there's no decision to make it was a lot easier than if they had said well, he could have a transplant but it's up to you. Nearly 8 months on we have a child with more energy who is doing amazingly well.
I hope this helps and I haven't waffled on! Please let me know if you want any other info.
My daughter was put on the list this time last year. The phone call came to tell me that she was active and although I knew it was coming it was still a hard call to take as it makes everything which was talked about become a reality. We were told that most calls would come in the evening, so every time the phone rang after about 6pm my heart was in my mouth for the first couple of weeks. After that we started to relax knowing that we had our bags packed and that we were never further than 50 minutes from the airport.
We had spent a lovely day at the panto with family and headed to my in-laws for new years eve celebrations. The phone call came at 4am on New years day, the co-ordinator was fantastic, calm and reassuring. Any questions I had were answered and travel was arranged.
1 month after transplant she suffered complications and was put on the transplant list again, we were surprised at how quickly the phone call came this time - about 11pm on the 19th March, again the co-ordinator was brilliant. She is doing really well and living life to the full. Just remember as long as you are prepared you'll be fine.
Deal with all the practical stuff - packing bags, arranging accommodation etc - so that you know you're ready to go and can focus all your energy on coping day to day with the uncertainty of it all. Even things like researching places to eat/shop etc in advance can take some of the stress away from the time in hospital. Also plan your time off work as much as you can - we were in hospital for 7 weeks due to post-op complications when the standard time is 3 weeks - so make sure you know where you stand so you can arrange sick leave etc accordingly. Our daughter was on the list in the lead up to a planned live donation from my wife. It helped me to remind myself that this was our only option and an amazing one in the potential it had to succeed and bring a better quality of life for us all. So far that is exactly what it has achieved so all the strain and heartache is worthwhile to give you and your child that opportunity.
Hi there
Our son was placed on the transplant list 9 years ago this coming January and I remember it as being a relief more than anything. It seemed that although we had reached a point no parent ever wants to, there was finally going to be an 'answer'. He was diagnosed with biliary atresia at 6 weeks and suffered very serious complications during an initial attempt at a kasai and then a very stressful and ultimately unsuccessful 2nd attempt.
From the moment we returned from the assessment prior to him being active on the list we had bags packed and phone numbers for various back up plans for someone to look after his twin when we received the call as we are almost 200 miles from Birmingham . My mum even made enquires with various police forces to ensure we knew what we would need to do if there was an incident on the M6 which might stop us from getting to Birmingham on time!! I think it helped her feel like she was doing something constructive in a situation when everything is out of your hands!
Like most people we expected the call to come in the evening, but being our family, nothing so standard actually happened and it was about 11am while I was taking the 'well' twin for an eye test that the call came. A quick u turn and call to Grandma to come and hold the fort and we gathered everything we would need if the transplant went ahead, and also everything to bring back again as we were told the transplant was actually planned for another child and we were the back-up!
4 hours later he was in theatre, by 1am the next day he was in ITU and by 2pm was back on HDU on the ward, much to everyone's amazement given our son's tendencies to complicate every procedure he underwent!
One minor blip due to a tummy bug about 3 months after transplant and he has never looked back. Now, because he is by far the more 'robust' healthy looking, energetic one, anyone whole knows our family history but doesn't know the boys well, tends to think it is the other twin who was ill. There is no stopping him and the last 9 years have flown by in a blur of normality - couldn't be more different to the first 9 months of our life as a family.
While I really do realise that it is difficult to believe people who have 'come through the other side' ( I tended to politely smile and nod when people would tell me their stories, thinking "It's alright for you, how can I believe it will be the same for me?"), try to think of the transplant list as the beginning of a new chapter rather than the last resort. It took me several years to stop dreading every 3 monthly blood test and clinic visit, but it does all get easier!
I seem to have rabbited on ridiculously, but I hope this helps.
Good luck!
Not what you're looking for?
You may also like...
My 11 week old has just been diagnosed with biliary atresia...how do you get through the early days?
Suggestions on how to include my 3 year old now my baby has been diagnosed with biliary atresia please?
