Ormond St Hospital Prog

gunsandbanjos

These programs are hard to watch, I've been through a lot of similar situations with my daughter and it's heartbreaking at times. Thankfully she has come out the other side but while we've been in we've seen many who haven't. How the parents cope I'll never know:-(

gunsandbanjos

January20 wrote: »

This episode started an animated discussion here between my dd and I on whether a person who carries a bad gene, and has a 50/50 percent of passing it on to their child, should ever consider having a child.

This is why I have only 1 child, my husband and I having seen a geneticist have come to the decision not to have anymore as there is a chance our next child could have what my daughter has.

There is no way I would take that chance and risk having to put another child through everything my daughter has had to endure.

aliasojo

January20 wrote: »

This episode started an animated discussion here between my dd and I on whether a person who carries a bad gene, and has a 50/50 percent of passing it on to their child, should have ever considered having a child.

That's a difficult question.

I know it's not the same thing, but I know of some learning disabled young people who have started relationships and one pair want a child.

My son is learning disabled amongst other things and would not be able to bring up a child. He's physically able to father one though.

I don't think people disabled in this way should procreate. I don't think it's fair on the life they would be introducing to the world and supposedly be responsible for. I daresay others might disagree.

In the case of a 50/50 genetics problem, I think that's much more difficult to reconcile, although personally I might opt towards adopting.

January20

I agree with you Aliasojo, it's a very difficult decision to make. My dd and I disagreed because my belief is that it is unfair to knowingly bring into the world a child who might have a life of suffering and lengthy stays in hospital to end up dying very young.

But then, it's easy for me to say that isn't it? because I haven't been in that situation. It must be awful to have that yearning for a child and not be able to have one. As for adoption, good idea but the rules for adopting are so tough, what would the chances be?

ETA: isn't it Caroline Ahern who said that she wouldn't have any children because of her eye condition that is genetic?

Toto

I have a genetic condition and I did choose to have more kids. I'd never judge anyone else for their decision though, one way or another. Why spend the energy discussing something that you really won't have an answer to until you are faced with the situation. Just be thankful that it's one set of crappy cards you weren't dealt

kj*daisy

I think the girl who had the baby despite the 50/50 odds also had the condition and wasn't nearly as bad as the baby, because she didn't have the extra problems her daughter had. So she may have thought that as she's lived with it, any child she had could live with it too not expecting her daughter would be as poorly as she was. I also wonder whether different decisions would be made if we didn't have access to good free universal healthcare in the UK? I have found each episode very moving and my heart goes out for the children and their families.

kingfisherblue

I can't watch the programme. My son was given four hours to live, just before his first surgery at nine hours old. Luckily the operations were successful - four different conditions, all of which would have caused his death within a couple of days, all operated in the same session. He has had further surgery since.

My son, who also has Down's syndrome, was 14 last month :j

I have been one of those parents. Ronald MacDonald House at Alder Hey has been my 'home' on two occasions (please, do donate your change if you buy from there, it really does make a difference). I have spent so many hours praying that my son will pull through.

Yes, my son is disabled, but as he has DS, he would have been disabled anyway (though not to the same extent). He is a joy for me and for our family, and we love him dearly. The doctors, nurses, behind the scenes staff, everyone at Alder Hey, GOSH, and other children's hospitals are wonderful and they do a fantastic job. I know that I am not the only parent who will never be able to express how grateful I am to them.

I can't watch TV programmes like this though. They make me too emotional.

CH27

kingfisherblue wrote: »

I can't watch the programme. My son was given four hours to live, just before his first surgery at nine hours old. Luckily the operations were successful - four different conditions, all of which would have caused his death within a couple of days, all operated in the same session. He has had further surgery since.

My son, who also has Down's syndrome, was 14 last month :j

I have been one of those parents. Ronald MacDonald House at Alder Hey has been my 'home' on two occasions (please, do donate your change if you buy from there, it really does make a difference). I have spent so many hours praying that my son will pull through.

Yes, my son is disabled, but as he has DS, he would have been disabled anyway (though not to the same extent). He is a joy for me and for our family, and we love him dearly. The doctors, nurses, behind the scenes staff, everyone at Alder Hey, GOSH, and other children's hospitals are wonderful and they do a fantastic job. I know that I am not the only parent who will never be able to express how grateful I am to them.

I can't watch TV programmes like this though. They make me too emotional.

Alder Hey is amazing. We have two very disabled children in my OH's family & i've spent many hours there & the staff are angels IMO.

paddy's_mum

kingfisherblue wrote: »

I can't watch the programme.

I have been one of those parents. I have spent so many hours praying that my son will pull through.

...children's hospitals are wonderful and they do a fantastic job.

I know that I am not the only parent who will never be able to express how grateful I am to them.

Oh, my! This has made me weep with the memories it resurrected.

I've been one of those parents too when my now 40 year old daughter was born with a complicated hole in the heart that was misdiagnosed until she collapsed at the age of 18 months.

She came under the care of Great Ormond Street Hospital until she was strong enough to undergo surgery at the age of almost five. She was given a 50/50% chance of surviving the operation but pulled through and is herself now the mother of two healthy, strapping boys.

The very first thing that just burst out of me on seeing her in the recovery room was "she's pink, she's pink!" and I couldn't get over seeing such a profound change from the pale, sickly, weedy little girl that I so loved and had fought so hard for.

So far as I am concerned, GOSH gave me back my child and till the day I die, I will never forget how good, kindly and supportive they were to me and my family.

Children's Hospitals are a breed apart and I for one thank god for them.

mammyof7

January20 wrote: »

I agree with you Aliasojo, it's a very difficult decision to make. My dd and I disagreed because my belief is that it is unfair to knowingly bring into the world a child who might have a life of suffering and lengthy stays in hospital to end up dying very young.

But then, it's easy for me to say that isn't it? because I haven't been in that situation. It must be awful to have that yearning for a child and not be able to have one. As for adoption, good idea but the rules for adopting are so tough, what would the chances be?

ETA: isn't it Caroline Ahern who said that she wouldn't have any children because of her eye condition that is genetic?

I always said that the only time I would ever terminate would be if I were to fall pregnant with a baby who I knew was seriously ill. However when I did find out that my son had a terminal illness my perspective changed completely.

I knew from when I was 15 weeks pregnant that my baby was as seriously ill as he ever could be. Yet (and I'm not religious at all!!) I just knew I could not be responsible for the decision to end his life.

His condition was one that meant that he wouldn't suffer and I think that helped me with the decision.

Anyhow, my little boy died very soon after he was born but I will treasure that time for the rest of my life. All he knew in his short life was love and to be held.

I guess what I'm trying to say is that no one could possibly know what they would do unless they were faced with that horrible horrible dilemma.

I haven't watched the programme and to be honest I would find it too upsetting. However I have the greatest respect and admiration for the parents and staff who look after seriously ill children. There's nothing like the pain of watching a child die.