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Hepitisis C - what would you do?(23 Posts)
Hi All, first post. I love reading the threads on here, they have kept me going at times. Me and my DH are first time adopters and our would be LO is 7 months. Yesterday we were one week from matching panel, and we had devastating news, our LO was confirmed to have the Hep C virus. Since then we have been told the advice is to pull us from matching panel whilst further tests are carried out. We have absolutely no experience with Hep C but had a call with the local doctor. The doctors advice was that they had never had a child in 15 years test positive, and if we wanted to still go ahead the LO would need further tests (would happen anyway) and we would need to meet with a specialist to ensure we know all the facts and uncertainties. My understanding is that treatment isn't really possible until age 3 and mainly it would be keep having regular tests until then (as some people clear up on there own..). We are at a loss, devasted that this has happened so close to panel and that we may have to say goodbye... it was suggested that if we go ahead we will have a tough time convincing panel due to all the uncertainties. I wonder though what's the alternative for LO, that he remains being treated but has no chance of adoption until older through no fault of his own? It just seems to unfair to give up. Anyone who has adopted a child with Hep C advice would be appreciated especially if you knew before panel. What would you do if you were us, is there any chance we could argue we can take it on? At this stage we have a definite connection with LO so it won't be easy 😔 The main risk if we go ahead is that liver damage has occurred and we won't know, but for that to happen at such a young age seems unlikely from what I have read. Any experiences appreciated.
It you feel you can cope with any eventuality then fight for your little one. If this puts you off then it was probably not meant to be. I'm so sorry, it is very tough.
If you really want to govsgead I'd read up on everything and take my chance with panel.
Ps I have not experienced this personally.
I mean of you really want to go ahead.....
I have an adopted 3 yr old with v complex medical needs. I am struggling to see why panel would be an issue .
Dont know much about hepatitis but children with lots more complicated conditions get adopted !
The big question is can you live with it and the uncertainty ? If you can then be pushy in stating your case and dont let them make the decision for you.
Can not advice re. Hep c but wanted to suggest you consider placing this on the adoption uk forum as there is a very large pool or very experienced adopters use it regularly and I think it is more likely that someone on there will have experienced it. All the best with your decision!
My understanding is that you cannot have a definitive diagnosis of Hep C for a baby under 12 months of age (see page 10 of the NHS booklet below):
DD came to me at 11 months and still had antibodies for Hep C on her most recent test. She was tested again at 18 months and got the all clear. However if your LO has had a positive result on the PCR test as opposed to just antibodies being present I think this does give a higher chance of the actual virus being present (as opposed to antibodies alone).
I would recommend speaking to the Hep C trust (if you haven't already!) www.hepctrust.org.uk/ who will know far more than SWs or GPs. Then go back to SW with your understanding of the worst case scenario and what you would put in place to manage that.
What maiyakat said. There's a world of difference between antibodies being present (which you would hope would decline over time to nothing) and actually testing positive.
Absolutely do not trust SWs on this. I probably wouldn't really trust a GP either.
Thanks for the messages, unfortunately it is the actual virus being present.. we had the antibodies in the first instance and it is now worst case scenario. Thanks for the advice around other forums and Hep C trust... will look into them. Not understanding it myself, and SW not understanding it either is making it all a bit of a nightmare. There was a suggestion that they may not even let us go to Panel so we will have to see...
My son had a very uncertain outlook at placement. I think that you need to do more research and speak to the consultant. As others have said you need to know what the worst case scenario is and whether or not you feel that you can cope with that and also what is the most likely outcome.
we have 4 adopted little ones all with some level of health needs.
we took them on knowing they had 'uncertain futures' and went to panel knowing that their outlooks would be uncertain, and that we could not see into the future.
We did extensive research into the conditions so we could demostrate to panel we understood the risks. we met each time with the adoption medical advisor to go through how life could be - worst case scenario for each one.
however life can deal some shitty blows and it more may unfold if you go ahead with this little one - are you prepared for the possibility of liver failure, lifetime of meds, needing a transplant,
are there risks to yourselves with hep c/blood exchange etc that you will always have to be aware of?
as PP said go to hepctrust - do your own research now.....make an informed decision, do not trust SW, they will not give an unbiased opinion, and although you have fallen in love with a LO on paper, that LO deserves parents who can care for all his medical needs
hth, it is tough going when this happens
Thanks for the advice. I've spoken today with the Hep C trust and also Children's Liver Disease Foundation. Both have been really positive. Hep C has a stigma attached to it like other diseases, but actually treatments have improved massively and with such a young diagnosis there is no reason that he shouldn't recover. Current treatments are 99.9% effective at curing according to Hep C Trust, that is a good thing to know. Of course we will need to meet with specialists face to face and know all the facts, but the main thing as we understand it is about limiting the posabilities of further infection to others which is basic hygiene and first aid practice. The Hep C trust said that there will be no damage to the LO in early and adolescent years, it only really starts to affect people with it over 20-40 years so he has every chance.. we need to do lots more digging and reading but we are feeling much much morbetter positive
Oh good news minnie. Glad you are feeling more upbeat about it all. Good luck x
Can I just add that a week before matching panel our eight month old match was rushed into hospital where he stayed for three or four days. They thought he might have some sort of heart condition. Our social worker tried to push us to delay panel and we point blank refused- at that point we had committed and our view was his in utero experiences meant we would have to accept health/developmental uncertainties and this was one of them. That match turned into my almost offensively healthy three year old son who is currently sprawled on the sofa after a day of running around happily at nursery. He does actually have a murmur but it is monitored and does not currently cause any issues.
I am not saying: "Hep C, pah, minor!" but what I am saying is, if you have done your research and think you can accept this uncertainty then fight for your match. In our case I completely understand that our social worker was thinking of us but by that stage we felt that our priority was to fight for him. So we did, and I am very glad. Of course, the placing agency was very impressed by our commitment and there was no question after that the match was going to go through.
I think you should look back to the 'tick list' you did during homestudy.
Think where Hep C would have come and what you said then regarding accepting or not.
Then think why you said that, and see if your reasons are still valid.
If you are going 'against' what your tick list says, you need to be prepared to argue / justify why to the SWs and panel.
Thanks again, we were very much open on the tick list except where we felt a child could not have an 'independant adult life'. We talked about this yesterday and agreed had we known, we would have done the same thing in wanting to find out as much as we could before it being a straight no. Having done some research, we are feeling very positive about it, it has no reason to develop long term problems if treated and we still accept the other uncertainties around LO that we knew about before. We really want to fight for them, we need to have that conversation with the SW though and see their thoughts.
It has been a bit of an eye opener, this thread, as I had no idea that Hep C was so treatable. One of the things we had on our tick list thing was no life limiting conditions. I have lost someone I love in their teens and I know I would really struggle with the idea that my child had a limited life expectancy. We were open to HIV which, due to the drug therapies, no longer limits life expectancy significantly but I did not realise treatment had developed so significantly with Hep C. I really hope it works out for you, Minnie. As I have said upthread, the fact we had so firmly committed to our child and wanted to proceed stood us in good stead at matching panel. Keep us posted!
I regularly take care of and take blood and other specimens from HepC patients. Precautions are available for protect your family and improvements in treatment are much better now. There are so many variables in children for adoption I am sure this is not the worst
Good news, we got a yes from panel and are going ahead. So so happy ☺️ Hep C really isn’t a big deal, it’s treatable. The main issue is challanging others misconceptions.
That's great - congratulations, and what a great start that you've been fighting for LO already
Congratulations! Glad things didn't get delayed unnecessarily. Now the countdown to intros begins
Our DD tested positive for Hep C and we were told about that when we were first matched with her.
We did all of the things you have done including calling the Hep C trust who were brilliant at putting our minds at rest.
We decided to go ahead to matching panel on the basis that we would look into treatment once she was old enough (if it was needed )
She continued to be tested periodically ( not nice for her ) sqand at 14 months we got the confirmation that there was no longer any trace of the virus. She's a lovely healthy 9 year old now.
A friend had contracted hep c as a child after a car accident a long time ago. Massive problem then (stigma, and not wanting to infect partner and babies - no probs health wise) but then cure came along and whilst the treatment wasn't very pleasant, she's been virus free for many years now
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