19 wks and dc has downs, utterly torn by what to do

[youstillhavetochoose]

The amino results will confirm on Friday but I had harmony test, so my brain knows there is no real hope though my heart absolutely believes it will be ok, that it is all a big mistake by harmony.
I have spent all this afternoon looking up people's stories of life with a child with downs,but just feel more confused. It doesn't help. Some people are delighted with their child, others regret continuing the pg. I don't know how disabled my child will be so it doesn't help to read about other people's kids.
The thought of such a late termination fills me with horror. I will basically consent to my baby, whom I already love, being killed and then give birth to his dead body. I previously had a much earlier termination, in different circumstances, and if took me years to come to terms with it. I still regret it.
I swore I would never do that again, but now I think, could we really cope with a child with downs? We have no family, can't afford help and I can't give up work.
One minute, I am sure having and loving my baby is the right choice. The next, I am sure a termination is.
I have to decide when I get the result on Friday as they will start the termination then if I want one. I really really hope the miracle happens of the result being negative for ds, as I don't see anyway to make a decision on this.
I know there is no question to respond to in my post, guess I am just venting.

I know you didn't ask a question, I just thought I'd tell you about my experience in this.

I work with children with special needs, mostly autism, and have worked with lots of kids with Downs. As you know, there is a huge variation in the level of disability, but I have to tell you that I've never worked with a child with Downs who hasn't been an absolute delight! Every single one of them has had such an incredible sense of fun and amazing sense of humour, and I'm including the kids with severe learning difficulties in this. They might not be able to talk or do many things for themselves, but they sure as hell can have a laugh! I've seen plenty of kids with Downs who are really able too, who thrive in mainstream school and are able to work when they are older. If your child is more severely affected, there is help available which you don't have to pay for. You might have to fight for it, but it is there. I'm not saying it will be easy, but at times it will be fun. Sorry if that's not much help!

Thanks Coastergirl, I do appreciate this.
Must admit I am deluding myself even more that harmony test is a false positive at the moment. Apparently it is for one in 300 women. This delusion is the only thing keeping me calm just now.

So sorry you have to make this decision. No first hand experience but my friends have a downs baby and he has brought so much joy to their lives. Despite some health issues he undoubtedly has a high quality of life. They went on to have 2 other healthy children so it wasnt as much a strain as they thought. They were low risk in pregnancy- 1 in 5000 or something and they were the one so they didn't have to make the choice you have to and I know are pleased they didn't. Im sure you'll make best decision for your family.

Firstly, there is still hope. You've got a baby. Growing away happily in there. It's possibly not the baby you were hoping for, but still a baby.
Just over a year ago I stood in your shoes. I remember the day we got confirmation of Downs. It felt like the world had come tumbling down around me. I stood on the platform of my local station, on the way to London for a scan, and just for a split second I considered throwing myself on the tracks.
Like you I felt that I couldn't terminate. Couldn't do that to my baby, but couldn't see a way forward.
The first thing you need to do is nothing. Just sit back and let the shock wear off. It's amazing the difference a few days make.
I knew my baby was staying. My partner wasn't happy, but as I told him, "if I don't do this, you might never forgive me. If I do this, I will NEVER forgive myself". I'm not anti abortion, it just wasn't for me.
I can honestly say the next six months were hell. We all ask ourselves the same questions. What about?... what if?... How can we?... And you grieve. For the 'should have been' baby. I went through the full 5 stages!
Helpful friends and relatives make it worse. You get the DS clichés...
"what will happen when you die?"
"what about my other kids"
"how will you cope?"
And at the end of the day, really, there are no answers. Just like any other baby, there are no certainties. You could have a perfectly 'normal' baby, who has an accident or illness, and needs lifelong care. You could have a normal pregnancy and an undiagnosed condition that affects the life of your child. Nobody knows.
The way I see it now, at the other end of that year, (which, btw, has been the most intense year of my life) is that it all comes down to faith. I don't have faith in God, but I have faith that everything will be ok and that we can do this. And you know what? it is and we are.
I have a beautiful 7 month old daughter. (And dd15 and ds18) She's everything to all of us. She's got strawberry blonde hair and navy blue eyes and a smile a mile wide. And she's completely changed the dynamic or our world. Everyone loves this baby. Family members have come together, grown men melt when she smiles. she's brought so much light to the world. I wouldn't change her for ANYTHING!
She's meeting her milestones at the moment, long may it last, but when she grows, whatever happens we can deal with it.
But seriously, shes just a baby. she doesnt have 3 heads, and she doesnt do anything more or less than any other baby. she eats, sleeps, cries and poops. And we are just a normal, dysfunctional chaotic family. Nothing special.
I'm sure that someone else will come along with a different view soon, but this is mine. I don't know if it'll help, I hope so. x

And just for the record, I have read loads of blogs, and posts, and I have made some lovely, lovely friends since Lucy came along. I've never found one person who regrets their child.

SaggyAndLucy - I rarely post but just wanted to say what a lovely supportive message. Your daughter sounds delightful. Op - all the best at this very difficult time for you.

So lovely to hear all these positive stories. I too have worked with some children with Downs, and seen a range of abilities but not met one parent who regrets (or admits to) their child.
A work colleague a few years ago had a little boy with Downs. Not diagnosed antenatally, huge shock to them all. He is gorgeous! Coping well in mainstream school. They had 2 other children after him, and all the children get on really well.
Good luck. But don't rush into anything. If you don't want an abortion Friday just say no, even if you haven't quite decided what you do want. Don't let them force you into it if you're not sure it's right for you.

I was in the same situation as you a year ago, it was very stressful so I appreciate what you are going through. I started looking at what a termination would involve and it is not pretty reading.

There is no right or wrong decision here. Find out as much as you can from the amnio about the chromosomes to see how severely your baby would be affected if it had DS.

Good Luck on Friday xxxx

Sapat you can't tell how badly a child will be affected from a chromosomal work up. only that a child has the extra chromosome. Tests can check for related problems like heart or bowel issues, but the level of developmental delay isn't measurable prenatally as far as I know.

Thanks everyone, last night I was feeling I wanted to continue with the pg but when I spoke to dh he was more in favour of ending it. He is worried about effect on us as a couple, on ds1 who is a toddler ans about the future for this child. I worry about that too. In a way I think when this child is young it will be easier but I will worry more and more as he grows to adulthood, which is the opposite of what you expect.
But if we end the pg I just feel like I will always feel there is a gap in our family.
It is not easy.

I was about to ask if you had other children. You both need to consider the impact on your existing family. I have a bias because I've seen the impact on siblings of a disabled child and the mother now wishes she's aborted.

A horrible decision to have to make.

*she'd

Really sorry to hear you find yourself in this situation. Our baby didn't hav downs but a more complex chromosomal problem which meant she only had about 40% odds of getting to the end of the pregnancy and would have had a v poor quality of life if she'd survived.

I don't regret the termination I had (at 18 weeks). It was hell at the time and yes, there is a gap in my family, but we've since had a healthy son and the memories fade...she has become a part of who I am and life does go on. I can highly recommend the charity ARC (antenatal results and choices) if you want someone to talk to, they can advise you and put you in touch with other people whatever you decide.

Wishing you best of luck and thinking of you. It's an awful time when you receive shock news.

I have to say that my experiences of children with Downs have only been positive. My friend adopted two children with Downs syndrome who are now adults and I don't think she regrets it for one moment. One is more capable than the other and lives in a shared house, but they have both been able to leave home for periods of time and are delightful adults.

I had my own children 25 years ago and refused the Downs test because I thought it was possibly the one disability that I could cope with, much more so than an autistic child (obviously there is no test for that). Only you and your husband can decide what is best for you, but don't discount the possibility that you will be able to cope and cope well.

Hi

This is such a difficult thing to have to for through. And there's no right or wrong choice. I was told that apparently in this situation 96% of people choose to terminate. That statistic made me feel like less of a terrible person. We had a TFMR for Down's syndrome at 14 weeks. It's the hardest thing I've ever done. There are a huge list of reasons why but I think the reasons can be different for each person/couple.

You have all my sympathy and wish you the best.

In terms of siblings my eldest is severely autistic - he is a teenager now & pretty challenging. He's non verbal & needs more support than any of the young people with DS that I know at his school. He will need 24 hour 1:1 or 2:1 care for the rest of his life. This is much higher than is 'typical' for DS.

Anyway he has 2 younger siblings. Fairly recently the topic of termination came up wrt to DS when I was giving ds2 a lift back from a theatre group which included a boy with learning disabilities & ds2 was asking about DS. I explained (very non-judgementally) about termination for DS. I gave no opinion at all - and ds2 was utterly horrified. He couldn't believe it and just kept saying 'but why? Why would someone do that, they just need a bit more help that's all'. He was actually very upset.

Anyway I gave him a few 'why's' & tried to calm him down a bit, but the interesting thing for me is that he is in a position to judge what it's like having a sibling with severe learning disabilities and he couldn't understand why anyone would do it. He was extremely confused & upset by the idea.

Having a disabled sibling has obviously affected ds2 & ds3, but it's not all bad - like anything it's a mix & there are good things as well to take from the mix - some of those are very good things indeed.

Hi , I too have a daughter who has Down Syndrome and although I did not know before she was born, I remember the days following her birth as a very sad time. I was told that you grieve for the one that you thought you were having and indeed it is a huge loss to deal with. I did not know before she was born and I can honestly say that I am glad because I truly believe that there is no right answer, it is an individual decision and only you know how you will feel.

14 years on and I can honestly say that it has really not been, in any way as difficult as I thought in those dark days it might be. She very simply brings joy and laughter into our family and this is not just on a simple level, sometimes her clarity of thought is exceptional, she is able to cut through so much of life's debris and just say it how it is.

On a practical note an immediate diagnosis means that the services and support are in place, and although you may have to at times push for what you want, no one will ever tell you your child does not have a disability and therefore does not need something.

With the benefit of hindsight I can see that we were really scared, but our daughter was not, we were the ones who had to learn to live with DS, she has no problem with having Down Syndrome, that is just who she is. All she needed from us was our love.

In the same way, we all, throughout our lives, find out that there are things we find difficult and because of our limitations, or not liking doing something we choose a different path or find a way to get round it. As way of an explanation I recently asked my daughter how she would get on her own, from our house to the other side of London, knowing this would involve a walk, buses or trains, timetables etc. Her answer was immediate, she smiled at me sweetly and said 'taxi'. That was the one option that I had not considered.

I once read a letter in I think the Times newspaper, it was written by a young man who had Down Syndrome, it said;
In the same way that I have blue eyes I have Down Syndrome, I do not suffer from it.

The Down syndrome association has some fabulous people and information, there is nothing that you can say that they will not have heard before, it may be worth you getting in contact with them, they are based in Hampton Wick, Middx.

If you have any questions please pm me and remember you are not alone x

Oh something that comes up a lot on my Facebook feed (I have a lot of friends with children with DS) is this: Downs Side Up Just ignore if not helpful, but I always enjoy reading the links.

I asked dd1 on the way to school today, what she thought about this issue. she reminded me that we did in fact ask them their opinion when we found out, and they are 100% on board. They are under no 'obligation'. There are other options for care when I die! And they adore their sister.
I actually think that this subject is a bit of a red herring. like with any baby, that stuff is half a lifetime away. There's far too much of the now to deal with. I don't look at my child's life as a whole. who does? It's more than enough to cope with now, this week, this month, this year....
Any child could need life long care. Any child might need it's siblings to care for them. How many people think about that stuff when pg?

Hello
I posted on your other thread about my ds (who has a genetic condition similar to Downs Syndrome).
I just wanted to send you some love.

I have a friend whose sister has severe learning disabilities, she is in her 40s, hers sister is in her 50s. Their parent's left a very good care plan in place, so that their younger daughter would have something in place to work with. She has a busy life a family of her own, has travelled the world, and still helps with the care of her sister. She may have just been being kind to me (as I have a disabled son), but she said that she loves and admires her sister so much, and there have been some hard times and some difficult decisions, but that could be the same for any family member for whom you feel some sense of 'obligation', whether disabled or not.

SaggyandLucy your daughter sounds amazing :-)

This topic is very intriguing to me. As a pp said, there is no prenatal testing for autism. Autism, like Down Syndrome, has a wide range of severity. There is no way of knowing how mildly or severely a person will be affected by their condition until you watch them grow up. I just think that people can (usually) cope with much more than they think they can. People say that they could cope with a child with DS, but then their apparently "healthy" children could go on to develop autism, mitochondrial diseases, any other number of conditions which could be far more serious. The very high figures of people who terminate for DS says to me that people often assume the worst. I'm not saying that terminating for Downs is wrong, I believe that everyone has to do what is right for them. I'm also not against abortion in general. I had a very early termination of an unplanned pregnancy a few years ago (I was 5 weeks) and have never regretted it, it was right for me. I'm pregnant now, and wouldn't have terminated if I received a diagnosis of Downs. But I know I'm not like others. I adore children with special needs and actually find them far easier to deal with that children without special needs. I guess it just makes me a little sad that such a high percentage of children with DS don't get to see the world. I think that they bring such laughter and joy :-)

SaggyandLucy such a lovely post hearing about your family

Youstill I'm so sorry you are struggling just now.
When I was younger I worked with people with all sorts of disabilities and though I loved my job I knew that I wouldn't cope with a child with a disability. I was young and seeing parents absolutely exhausted and sometimes at the end of their tether told me that it wasn't the life for me.
I had every screening known to man and knew that I would terminate a pregnancy that showed an abnormality. Ds was my fourth pregnancy, the screening showed everything was well, ds was born and I knew something was wrong from his earliest days and he was diagnosed with pretty severe autism before he was three.
Do you know what? He's my pride and joy, I can parent a child with a disability because you never know your strength until it's been tested and yes ds has definitely tested but he has also brought me more joy than I ever imagined and our family has been enriched by having him here.
I had dc5 when ds was 8, I still had all the screening because I like to be prepared even though autism can't be screened for but I wouldn't have terminated. As it is dd has autism too and that's fine, I did it once and I can do it again has always been my thinking.
Sending you strength for whatever decision you make x

You really can't base this decision on your DH thinking it will impact on your relationship - if you have a termination against what you want, that will have an impact on your relationship.

You are the one who will have to live with this decision forever, much more so than your DH or toddler. It has to be your decision

Hi OP

I'm potentially in the same situation. Currently waiting on Harmony test results, if positive an amnio about a week later will put me at 19 weeks. If positive, we will be ending the pregnancy. Its a horrible decision to have to make and live through, and then live with.

I'm not sure that other people's stories help at that much. The decision rests on your own personal morality / religious beliefs, your own life experiences, your circumstances, and those of your partner too. You'll both have to live with the decision, either way you could be wondering "what if".

I've also found it not helpful to talk to people in real life. Having told a very few close friends, we've made the decision not to tell our wider circle, or even our immediate families, of what's going on as it seems to invite to much comment on what people think they would or wouldn't do in your circumstances, which in the emotional state we're in only comes across as judgemental and unhelpful, however tactfully put. If we do end the pregnancy we will only tell people its for medical reasons and nothing else as it will be hard enough to cope with our own feelings let alone perceptions of others judgement.

I do take comfort from the statistics that say that 95% do terminate, although that is skewed by those who refuse testing in the first place because they wouldn't terminate. You are not the guilty person in the corner, many people end pregnancies for many many different reasons which others might have made different decisions about.

Anyway I don't have the answer for you but sending hugs and lots of sympathy because its a horrible place to be. x