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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Would I be unreasonable to change my child's genetics, so they carry the same blood type as my very sick DD?

46 replies

ParkerJ · 03/06/2016 17:36

I know it's more in depth than blood type and involves, HLA, etc.

However, my daughter needs a bone marrow transplant, she needs one or she will not live for very long. We are in the US.

She has a very rare blood type anyway and it has been very difficult to find blood for her to be given, but it's just about been ok. It's close to impossible to find a person with a correct HLA match so she can be given their bone marrow, or certainly not in time for when she needs it.

We were going to start TTC our second child anyway, before our daughter got ill, but then it didn't happen due to that, so we wouldn't just be having the baby to act as a savior sibling. Just making sure it has the rare genes that it needs, so it matches up with DD, so the cord can be used, no procedures from the child, ever. Just the cord will be used.

Is this really terrible? Our daughter needs to live and to just change something so minor doesn't seem like a very big price to pay, as in the child wouldn't know any different and we would be getting our second child we have always wanted...

It's so tough and I'm definitely not decided, hence I'm asking here

OP posts:

msrisotto · 09/06/2016 16:56

Can you even change DNA?

Hiphophippo · 09/06/2016 17:03

My son had a BMT when he was one due to a genetic disorder. We were very lucky to find an unrelated donor through the register but I know not everyone is able to. Best of luck with whatever you decide to do and I hope for the best outcome, its a horribly stressful situation and my thoughts are with you.

As for the procedure for taking Bone Marrow, I believe it is no longer as barbaric as it once was when they removed it from the hip. They now give the donor an injection which releases all the cells into the bloodstream and they take it like a normal blood transfusion and they dont have to spend any time recovering in hospital.

cookiefiend · 09/06/2016 17:13

I am sorry about the people advising you read a fictional book to give you insight into a such a stressful situation. Given the Jodie picoult had never actually been in your situation it doesn't seem like a great way to inform your decision.

I know there are ethical considerations. I think for me I would have to be satisfied that if for whatever reason the child turned out not to be a match, or the procedure didn't work would you love them and care for them as you did your first child. If yes then I don't see a problem. In your situation most people would do anything to save their child- ethical or otherwise. No one could blame you for doing that if you are able to. Good luck with your decision and I hope it all works out for you.

specialsubject · 09/06/2016 17:47

can you actually 'change genetics?' I'd be surprised.

what you need to do is get multiple embryos fertilised and then select the one(s) with the right blood type for implantation. And hope that it does turn out ok.

I have no idea on the legality of that. I don't have a problem with it morally, not that what I think matters - it is what is legal that matters.

whois · 09/06/2016 17:52

Read My Sisters Keeper by Jodi Picoult. That should help give you an insight to what you are thinking about.

I've read that.

I would not do what you are proposing OP.

whois · 09/06/2016 17:53

You don't need to have experienced something personally to explore the ethics around it.

AgingJuvenileBinkyHuckaback · 09/06/2016 17:54

Practically and legally AFAIK the only alternative is to have IVF, get as many embryos as possible, pick the ones with the right genetics to implant and ditch the wrong ones. That feels a little iffy to me, but actually I think that's an illogical feeling - it's very similar to what happens with standard IVF where the technician simply picks the embryos they think look most promising, and I don't have a problem with that - and I'm not a Catholic.

AnchorDownDeepBreath · 09/06/2016 18:08

I'm not sure this is illegal in the US? But I could be wrong. I thought they had much more lax laws on this type of thing.

Ignoring any practicalities about how it's done, as you haven't expanded on that, my concern would be what would happen if your older child needed further help down the road. If your younger child can provide that help, would you stand in the way? What if it was life threatening? At what age would you trust the younger child to decide for themselves if they wanted to help?

It may well be the case that you would have a second child anyway, but the second child is very likely to feel that at least part of their purpose was to "fix" their older sibling if that happens, and I think it'd be unbelievably difficult to have one child who desperately needs bone marrow, one who has the right bone marrow, and not do anything?

Even with the best intentions, it'd be easy to rationalise. They are young, they'll never know, it won't hurt, they'd be distressed by their sibling dying, they aren't in pain...

You'd also need to be quite aware of the older child feeling that the younger child was had because you wanted a "healthy" child. Any restrictions that their health puts on their life would be magnified by a healthy sibling without restrictions. Families can and do navigate this type of thing but it's certainly not easy.

expatinscotland · 09/06/2016 18:11

It is legal in many US states.

OlennasWimple · 09/06/2016 18:14

I wonder how many of the "just do it" posters are eldest children? (Genuine q, not trying to be goady at all- I just think this raises lots of issues about how children perceive their role and relative impotrance within the family)

SueTrinder · 09/06/2016 18:50

Well I'm the oldest child and I'm probably the strongest dissenter saying this is illegal, you can't do it. Of course I also have a PhD in biochemistry and and have years of experience of genetic engineering so have much more practical experience than anyone else on this thread and a working knowledge of the legality of this.

I do find it fascinating that so many people are saying 'do it', I would have thought the tide would have been very much the other way.

Gottagetmoving · 09/06/2016 19:16

I can understand why you would do this. If it's how you describe then absolutely go ahead but the dilemma does come if in the future, more is required of your second child. It would be a tough decision then and I am sure you would be so desperate (understandable) that you would not be able to think of the impact on your second child.

I feel so sorry you have this dilemma.

PotteringAlong · 09/06/2016 19:24

My dad needed a transplant. I was a genetic match. I did not donate because I didn't want to. Every concern I had was completely rebuffed by the transplant team (a bit different because it was an organ) but, fundamentally, I just did not want to do it. As it happened I became unexpectedly pregnant and the choice was taken away from me.

Do I love my dad? Very much. That wasn't the issue.

I wouldn't do it. I simply couldn't make that choice for someone else.

(Interestingly; I'd do it for my children in a heartbeat. It was risks to me and the impact on them that stopped me).

CaspoFungin · 09/06/2016 19:44

What transplant was it?

Say, a kidney transplant is a bit diffract to a bone marrow.

lougle · 09/06/2016 19:48

Pottering how did you find out you were a match? I presume you consented to initial screening? Were you surprised, then, by your decision not to agree once you were found to be a match? I would have thought that it would be far easier, emotionally, to never know that you could have donated to your Dad?

Booboostwo · 09/06/2016 19:50

I am very sorry you find yourself in this situation.

How much information have you had about your options? The way you write suggests some serious confusions about what exactly will be done. As other posters have mentioned you would need to go through IVF, prenatal screening to select genetically matched embryos and then hope for a successful implantation. Is your DD's condition genetic and if yes can it be screened for? As other posters have asked, what are the long term implications of your DD's condition?

As well as getting the right information I think it would be wise to get some genetic counselling. This should help you come to terms with the various options and make the best decision.

Pre-implantation screening to benefit an existing child is legal in the UK, although individual cases are, as always, subject to the judgement of the HFEA.

NNat · 09/06/2016 20:16

This reply has been withdrawn

Withdrawn at poster's request

Vixster99 · 09/06/2016 21:08

I agree with everything that Booboostwo has said.

I do know someone in the UK who has gone through this. I have to be careful what details I post as it could make him identifiable.
They couldn't find a suitable bone marrow donor for their little boy who was born with a rare genetic disease. I do know they had half a dozen rounds of IVF which all failed. All of this - and the lab screening of the embryos - had to be self funded.

Fortunately they eventually found a match on the bone marrow register and the little boy has had his transplant.

OP, do you have cord blood banks in the US?

kitkat1968 · 09/06/2016 21:20

Although it is undoubtedly morally iffy, I do not believe there is any parent who would not move heaven and earth to save their only child's life

PotteringAlong · 09/06/2016 21:25

I did consent to initial screening but had a very honest cards on the table conversation with my parents before we started. As it happened my mum was also a match and she donated to him about 6 months ago.

I was surprised to be honest. I thought I would change my mind but I didn't and am very lucky that my parents completely understood that.

expatinscotland · 09/06/2016 21:36

'OP, do you have cord blood banks in the US?'

Yes, and search is worldwide if there is no sibling or no suitable sibling.

My DD1's match was found from a cord blood donor in the US as neither of her siblings matched. And yes, they would have used either of the siblings, who were then only 3 and 6, had they matched. So tbh, I don't see why having a child who can match is such a big deal. Siblings are used to donate bone marrow all the time if they match, even very young ones.

Pottering, I'm glad your parents understood. TBH, I would not allow my adult children to be tested or to donate an organ to me because of the risk to them. I have already lost a child, if one or the other did such a thing for me, and I was no young mother so if such a case happened to me I'd be at least around 60, and got sick or died, I'd never be able to forgive myself and could not survive losing another child.

The OP hasn't come back. It must be a genetic disorder the child has. If it were cancer, you don't have time to wait at all.

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