just found out unborn baby has down syndromme help

[bubbles3037]

im 3months pregnant and have just found out my baby has down syndromme and im panicing has anyone got any advice

What does your OH think? It's early days and you need to get facts.

DS can be a wide ranging condition - with some people you hardly know its an issue, with others its much more limiting. And please do bear in mind that children with DS do grow up and many will need care as adults and it will impact on your family (maybe positively, maybe negatively).

As previous posters have said listen to all sides and opinions but ultimately the decision about what to do is for you/your OH and take into account the impact on your other children.

I'm going to back out now, because I am biased due to professional experiences with the children with more challenging difficulties along with their parents who are not coping or who are suffering with depression etc or who have children who need 100% support, but comments like this are not helpful:

whilst they have had academic difficulties they have all been lovely young people who have had happy lives. I can only comment on the teenage years, but the ones I’ve known have been happy and made friends easily, been more like a child and less like a teenager through the younger teenage years

Unfortunately, for either decision, there's no going back. Only you and your partner can make the decision.

Congratulations on your impending arrival! Will try to send a picture with a cute saying.

^i should have added abAbout the above comment, that the range of difficulties is immense. Children with serious problems won't be in mainstream. For some children, you would hardly know and they live full lives with little support, at the other end of the extreme, you might have non-verbal, non-communicative children. You have violence - teenagers with hormones, but little or no self control.

My point is, that YOU have to be sure in the decision you make for the rest of you life.

You can't und a termination.
You might be 'lucky' - read into that the meaning you want.
You might have a child with lifelong serious difficulties

As long as you can live with the decision, then you know you've mad the right one.

Totally understandable how you're feeling. You've just found out. You're in shock - it's normal to panic. Please try to relax, you are 3 months pregnant, so you have 6 months to read up, meet up with families who you can relate to, plan, prepare for your babies arrival etc.

The hospital team may need a confirmed diagnosis, rather than just high risk. Could you get a private NIPT to give you and your medical professionals more certainty, and would they then give you access to advice/info etc?

I'm sorry that you've had unexpected news op.

The best advice I can give you is to make all decisions as a family. Stick together and support each other.

Congratulations on your pregnancy!!

I have a BIL with downs syndrome and although he has some learning difficulties he is a very happy and healthy man. He is now well into his 40's with no long term health issues caused by his condition. He has a young mental age (think mid teens for understanding and capability levels) but that hasn't stopped him.

He has made thousands for charity, lives a full life, has been to college and works part time while also volunteering for another charity.

All cases are different but they can have very fulfilled lives and there is much more support than before.

They just have slightly different lives.

I also work in mental health and adult support and have experienced several levels of the condition. All have their pros and cons but all are individuals who excel in their own ways,whether it be artistically, musically, even memory ( I know a guy that can tell you every album and date of his preferred band and details I could never remember)

This is your baby and I'm sure you will love them regardless. Its scary but they are still a little person with personality and quirks. Its scary as right now it's all just information and imaginative.

Best of luck :)

Sorry rambled a little there. But you get the gist (and I'm aware it can be very difficult - especially when they hit their teens) so if you want to chat about anything in detail in happy to talk through it with you from a personal experience type side - bad and good

Sally Phillips is worth googling - she has a lot to say on the subject and talks very positively about her son.

She does - however she’s also expressed a view that women shouldn’t be allowed to terminate for downs and against NIPT testing. I cannot agree with that.

I am very uncomfortable with restricting women’s reproductive freedoms in any way. If we say you can’t terminate for x where does that stop? Who decides? Ultimately we need to ensure that women have bodily autonomy and that includes termination up to the current limit for ANY reason. Any condition, or simply not wanting to bear a child. If we lose that, we are screwed.

Sally Phillips is worth googling - she has a lot to say on the subject and talks very positively about her son

Sally Phillips has the benefit of a less-severely affected child, and plenty of resources, mainly financial, with which to deal with the additional challenges she faces. She, and many others like her seem to forget that not all parents of children born with disabilities are so fortunate.

She's also got some truly abhorrent opinions on women's rights, prenatal testing etc.

Awful woman.

When you have time I highly recommend listening to this podcast: Longest Shortest Time: Coming of age I with down syndrome it's wonderful - funny and sad in bits, but filled with hope

Hi op. I don't have a child with Down syndrome myself but I used to be a respite carer for children with disabilities and have worked with and looked after a few children with Down syndrome and they varied from needing a lot of care and needing only normal supervision, but they were all without a doubt the happiest children there. It felt like they wore their heart on their sleeve and loved everyone and everything they met and had no problem sharing that love and joy they felt. They were such lovely lovely children.

I just wanted to share with you that 8 years later I still feel bubbly inside when I remember their smiles and just how wonderful and joyous they were.

Hi OP I would never question anyone's choice to terminate but as you've said you want to keep the baby I will share my story. My dad's brother had DS. He was born in the 50s at a time when it was widely thought that people with downs shouldn't be educated, couldn't have a normal life and should live in a home. His parents (my grandparents) fought to keep him and he went to a normal school and thrived. When my grandparents died he came to live with us. I was 9 so I grew up with him. I cannot tell you how much we loved him and how much he enriched our lives. People often cite the impact on their other children, but my dad loved him more than anything and it was no problem having him live with us. He didn't have a paid job but attended a centre every day and helped out there. He was lucky in that he had no heart problems, but did have issues with his bowel (ulcerative colitis). He was happy, had loads of hobbies and was just so much fun. He died last year at the age of 60 from dementia (which is common in DS people). It progressed rapidly and he only really forgot who we were in the last couple of months. He was an amazing man and I miss him every day. DS is not a death sentence and it doesn't mean the child won't be healthy, happy, fulfilled, loved and loving. Tbh there are so many other conditions that can't be screened for that mean a much much worse quality of life.

Hi congratulations on your pregnancy. If you want more information on Down syndrome I suggest you ring the Down syndrome association. There is probably a local branch in your area that they can put you in touch with. I didn’t know my dc2 had Downs until he was born this was 1989. Having a child with a very obvious disability usually means you can get support from birth. I went on to have 2 more children who all adore their brother in fact they argue who he will live with when my Dh and I aren’t able to look after him. He is now almost 29 and has a lovely life he has a girlfriend and a great social life. X

Peacon: Tbh there are so many other conditions that can't be screened for that mean a much much worse quality of life.
Totally agree with that.

Sorry that was meant to be Harriet, not Peacon

I have a sister-in-law with Down's Syndrome, and a good friend with a 10 year old with the same. As others have said, it's really varied and you won't know for some years, exactly what you're looking at.

My friend's 11 yr old had no heart issues, but has suffered some physical health issues. He is now at mainstream school, is keeping up with the class average on reading etc. He has some 1:1 support at school and the parents are very involved, supportive and have plenty of resources to give him the best chances. They've also recently discovered it's a form of partial Down's Syndrome, so he isn't so badly affected. About 2% of people with DS have this form. Lovely kid, plenty of friends.

My sister-in-law is a 40yr old adult. She will never be able to live independently, but is able to cope in a type of sheltered housing and has plenty of activities. She is fairly healthy, and a much loved and involved aunt. She does find it frustrating that she can't be independent and do all the things she wants to, and this causes some tension. Her parents are also quite concerned about what will happen when they can no longer be so involved in her life.

When I was facing the possibility of a DS baby, I found this booklet quite informative: www.downs-syndrome.org.uk/download-package/looking-forward-to-your-baby/

Congratulations on your pregnancy! I fell pregnant with our first baby at 28. I had a 1 in 99 chance of our baby having down syndrome. We have NIPT which conformed our baby had T21. I had never met anyone with down syndrome and was devastated when we found out. I like alot of people had a very out dated idea of what bi g a child with down syndrome really is like in the 21st century. I too found hospital staff to be rayher negative. I decided to finds out the real facts for myself so I met families who have children with down syndrome and learnt about what life was like! They were very honest. I also found a Facebook page called don't be sorry which is fab. I now have a very cheeky 2 year old beautiful little girl. She is currently going through the terrible two's like any other 2 yr old lol. Lily (My daughter) had a heart condition which she had surgery on and is now doing amazingly well. There are hard days, scary days and bloody awful days but there are more happy days, fun days, amazing days and perfect days than I ever could have imagened. I do believe every woman has a choice and should do what is right for them . I believe from your comments that you have decided to continue with your pregnancy. Pease feel free to msg me. I would also advice you go and look at positive about down syndrome which is written by parents for parents. Also contact the Down syndrome association who can offer support and also put you in touch with local families and support groups. I joined a group at 15 weeks pregnant and still go every week now. There is so much support for children with down syndrome (and their families) now and they are achieving so much more than ever before because of this. My daughter has down syndrome but it is not who she is. She is Lily who has her daddy's blue eyes and my hair (Also my stuborn streak!) Lol. Good luck with the rest of your pregnancy. Xx

Congratulations on your pregnancy! Sorry you're having a tough time worrying, anything unexpected is a shock and there's so much fear of the unknown. I was the same! My son who has Down syndrome is now 13 and I could not love him any more. As you say knowledge is power and I have found that to be so, so true. There are so many people who will have a view and tell you what your child may not be able to do, which for my experience and I run a local group as well as national network, so know of hundreds of families, our kids surpass everyone's expectations and show the world how out of date so many people's perceptions are. There has been so much research about how best to help our children and young people that they are doing really well - majority now attending mainstream primary schools and more and more secondary schools - my son is in Y8 at our local secondary and he loves it, and indeed they love him! So, you have very exciting future ahead of you - you will not believe how frequently how heart will burst with pride as your child grows up! If you'd like to answer any questions, please just shout away! My son is on the positive about down syndrome website - he's Tom and I created the site as I realised the need to redress the balance... Try to relax and enjoy, you're going to be mum to an amazing child! xx

Congratulations on your pregnancy!! Please try not to panic but I know that is easy for me to say! I was in the same boat as you, my son is now 8 and has Down's syndrome, I knew nothing about it, I didn't know anyone else who had a child with Down's, I hadn't even met anyone with Down's and I certainly panicked as well. 8 years down the line, I now consider myself a bit of an expert and I wish I knew then what I know now. Your child is just your child, they may happen to have Down's they are still just your child. My son amazes me every day, he is keen to learn, loves school, even loves doing his homework which is something his elder brother doesn't. Yes, it has been difficult sometimes and it did take me a long time to get my head around it but there is a lot of support out there and you WILL be OK. I also suggest you take a look at www.positiveaboutdownsyndrome.com they are real stories by real people who are happy to talk to you if you want. Society and medical people have a tendency to be so negative about Down's but a lot of research has gone in to how they learn and how to help them reach their full potential and medical advances mean that most health issues they might have can be treated. Life for people with Down's today is a good life. Take it one day at a time and speak to someone who knows what Down's is all about and prepare yourself for a fantastic journey as a family. xxxx

Congratulations OP. Ignore the poster who says there will be violence. People with DS actually have very high emotional intelligence and form lovely relationships. It's not a path anyone chooses but it's not a path many want to leave, myself included. There's a huge amount of help out there and lots of fun to be had. Our children are amazing and their future is no more worrying than anyone else's IMHO.

^ the last few posts sound like the same poster with different names