# Approved today but asked to consider 2 kids with risk of Huntingtons!



## weemoofrazz (Sep 6, 2013)

Firstly I must apologise. The last few weeks have been really hectic and we have been on holiday too so I haven't been on the forum. 

Secondly we got a unanimous decision and a lot of really lovely feedback at approval panel today and are recommended for a sibling group of two aged 3-7 years 

However, we were already linked with a sibling group pre-panel but our SW now has another 3 potential matches and today immediately after panel we were asked to consider a sibling group (boy & girl) who have had 'normal' childhoods but would carry a 50% risk of developing Huntington's disease anytime from their mid-twenties upward!

This has totally come left of center for us as we hadn't even considered being matched with children who could develop such a horrendous 'life sentence' of a disease. Because we need to wait till the approval is 'official' before we can be told confidential details we are totally emotionally vexed.

I have a medical background and I have looked after patients who have had Huntington's and I really do have to be honest and say that of all the possible diseases that any human's could suffer it is by far for me the most awful and devastating. 

My husband has no medical background and had never even heard of the disease until today. Because he had to return to work post panel we haven't had a chance to discuss this yet, but I just wanted to ask if any other adopters had faced anything similar before with regard to taking on children who you know either have or could develop a significant genetic disease? 

Don't get me wrong, by it's very nature adoption is per say always a gamble to some extent when it comes to unknown potential inherited conditions, we understand that. But Huntington's is just so severe that I am not sure I could live the rest of my life day to day with the children, knowing that they could end up with an effective death sentence at the prime of their lives, not to even mention the implications of this on us in our elder years as we would need to be full time carers! 

I am feeling pretty overwhelmed at the moment!


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## Miny Moo (Jan 13, 2011)

Oh my goodness a lot of thought is going to have to go into this one, I know if it had been us we would of had to say no because of our ages, by the time they were in there mid 20's we would be into our 70's and I would feel that at that age we just would not be able to give them the care and attention that they would deserve.

Congratulations on being approved and good luck with your matching.


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## weemoofrazz (Sep 6, 2013)

Hi Moo

Were likely to be in our 60's heading into 70's too if they were to be unfortunate enough to develop the disease and that is a major consideration for me, particularly if they both went on to have the disease. 

I know that we should be celebrating our approval and the thought of other potential matches, yet I feel the opposite at this moment in time and can't help but think about the future for these 2 children. Once we have had a proper chance to discuss this and then let our SW know I think I'll feel better!


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## GoofyGirl (Apr 1, 2013)

Hi congrats on approval 
Oh dear that is tough. Sorry I really don't have any words of wisdom. Only you n DH can know what is best. 
Best wishes whatever you decide. 
Xxx


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## MummyPhinie (Oct 27, 2013)

Congratulations on your approval  we are really toting up the mummy to be list!

I have cared for young people with this and know how the disease can progress, so what a position to be put in. 

What I will ask is what is your matching criteria like? Because this adoption journey is such an emotional roller coaster it's easy to get pulled into something that you would never have considered or wouldn't be what you feel you can manage. We have a link but when we went to an activity day we saw a few other groups that I really took too, it really made me feel very mixed but we had to step back and acknowledge that whilst being open minded they weren't all suitable for us as a couple.

I work in a field that means I have vast experience of children with a number of difficulties and our sw could have considered a wide range for me, but what was important was what my dh felt and had experience of so our matching pro forma was more aimed towards him and us together. 

We were warned by our sw that we will always wonder and worry about the children we didn't end up with, so I'm sure these 2 will be very well cared for in the future if they do not end up with you.

Enjoy your yes! There is no rush to make decisions!


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## Mummy DIY Diva (Feb 18, 2012)

Saying no is really hard but necessary.  We said no to a lot of profiles before finding our girls.  In my experience when approved for siblings you tend to be shown a lot of profiles simply because so few people are looking at siblings and not necessarily because they are a good match for you.  It's very difficult and emotionally draining I got very stressed during this phase.  These may be the children for you only you know that but don't be guilted into something it has to be right.  Also if it isn't relook at matching criteria I know DH and I said no to life limiting etc as we have been through so much already and didn't feel we could sign up for that.  Hugs x


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## weemoofrazz (Sep 6, 2013)

Thanks for all your comments.

Phinie - Like you I have experience in caring for suffers of Huntington's. In our matching criteria we said would consider parents with a specific medical condition, although we did say no to cerebral palsy, HIV/AIDS and Down's. Like you there is a greater range of children that I would have the potential to cope with but my DH wouldn't, so like you our matching criteria is more from DH and our ability to cope with certain issues. 

DIY Diva - Saying no is hard but after discussion and consideration we have said no to these particular children. I think were going to end up a bit like yourself and have a lot of profiles to go through simply because we have an age range of 2 yrs 8 months - 7 yrs and are looking for a sibling group. 

I emailed our SW this morning with our answer. He told us yesterday that he feels he is going to be pretty inundated with profiles for us but we have previously asked him specifically not to bring profiles that he knows we wouldn't be a good match for. I am finding this first 'NO' difficult to deal with and I don't think I could take another 10 of them!

It's odd, you are so elated to have been approved after such a long and arduous process, most people perceive that once approved it's plane sailing! I am now beginning to realise that this next few months are probably going to be even more of an emotional roller coaster that the last 15 months put together!


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## Mummy DIY Diva (Feb 18, 2012)

It doesn't get easier unfortunately we said no to at least 20 children and it really broke my heart. We were 0 to 5 I think considering siblings and willing to look at children 3 + for older child is quite rare so children's sws can be quite pushy with your sw about showing you stuff. 

I would say give honest feedback ( even if you feel a bit awful saying it) as the more specific you are the more it rules out and the less but better matches you'll see. I said there was a hair colour that just made my heart sink every time I saw it. I thought our sw would be appalled but she was fine ruling that out cut over 50% of profiles that I was realistically going to say no to anyway.  We also realised that we wanted our youngest under 2 but were flexible about the oldests age. However this only came to light through being very honest with ourselves and each other on seeing profiles.  Then deciding how to word it in sw speak for sw. Good luck x x


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## Wyxie (Apr 10, 2013)

I think that is a _very_ big ask of anyone. With each child having a 50% chance of developing the disease, it is considerably more likely that at least one of them will develop it, than that neither of them will. What a very sad situation for these poor children.


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## Petite One (Jun 1, 2011)

Congratulations first of all on being approved.

It's a very hard decision to make and with your expertise and knowledge it probably makes it harder to say no. However working with children and people with a range of illnesses or life limiting diseases is not as hard or the same as caring for a child full time, as you know. It's both your decisions to decide what you can and can't cope with. That is incredibly tough, but for once adoptees can have some choice in what they feel they can cope with.  

Good luck.


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## thespouses (Jan 5, 2006)

Would they not genetically test the children? It's a hard one though as for a birth child, if a parent develops it, the parents could decide to test the child before they were 18, but if they decided not to, it would be the child (then adult)'s right to decide not to be tested. In this circumstance it might be in the child's best interest to be tested as then there is fuller information known about that child when trying to find an adoptive placement.


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## Jacobsmum (Feb 23, 2013)

The Spouses - hi!
I think Huntingdon's is different to many genetically linked diseases in that parents generally *can't* get their children tested - the results could have implications for them into adulthood (eg discrimination in obtaining life insurance, without life insurance issues getting a mortgage....), and is there a medical benefit to being tested? There is no cure, no early stage treatments (as yet) that could halt the illness or slow progression, and even if they test positive there are only percentage risks of when illness may feature, not clear timescales. It could be that you test positive but don't develop symptoms till over 60 or 70 years old - but are legally discriminated against in employment and other areas of life for decades before that. 
There are protocols devised so that someone at risk (eg with a grandparent with HD) can have PGD IVF without actually finding out if they have HD - but making sure any baby they carry definitely does not have the disease.
Protocols for testing tend to involve 'implications counselling' and a series of other tests; with follow-up counselling often ongoing for years after a result - even if the result is 'good news' it is still hard to come to terms with, especially if close family members become ill with HD. How would counselling happen for an infant? And if they tested these little ones what then? Both test negative (25% probability) - fantastic, much easier to find a home for them, great. Both have HD (25% chance) - then how long will they wait for a family? One yes and one no (50%) - nightmare scenario - do they try to place together? or separate? and if so, how will that work for the children in the future? A gets adopted because they have no genetic risk (at least of HD); B stays in care and then gets sick... A and B meet up as young adults - A had a happy home, lovely family and healthy life, B has bounced around in foster care and struggled due to knowing they have a life-limiting condition, and finding out at an early age. How does child A feel about that happy home? The forever parents who chose them and not their sibling? What kind of survivor guilt would A experience? And child B? 
Such a difficult situation.

Weemoofrazz - congratulations on getting approved. I hope your little ones come along, and soon, and I am so sorry you are having to make these decisions now. Heartbreaking, but actually important to know - and be able to be clear about - what you can cope with. I am still not even clear if adoption is for me - I know I would have to wait a while (till BC starts school, I'd imagine, to start the process... longer before approval and probably an age for a match, given I am already ancient and a single parent). These boards help me to get an idea of just some of the issues out there, so thank you for posting.

best wishes
Jacob's mum


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## thespouses (Jan 5, 2006)

Oh I didn't know that! Very interesting. A minefield as you say.


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