downs syndrome future pregnancy

[wendy2909]

I had a baby 5 wks ago and was devastated to find out he had downs. He is currently in foster care as I have been unable to cope. This was my 1st baby and was very much wanted. I'm 39 and my partner thinks the best think for us is to try again but I don't know how to pick myself up from this blow, I can barely function. It's unlikely that we will take the baby out of foster care due to my partners experience with a brother with downs. Does anyone have any advice on how I can pick myself up?

I wasn't sure how to answer this, but ... it seems to me that you need to give yourself time to come to terms with your baby's disability and arm yourself with the facts about Downs. You may well have already done this but have you spoken to mums of children with Downs to get another perspective? Both my children have autism so am no expert on Downs but I think that not all children are affected in the same way. You don't give much info here but I don't see how you can think of another pregnancy when you have just had your baby.

Wendy, I'm so sorry that you are going through this, you sound as though you are in shock. Have you had counselling, has anybody talked you through everything? Your dh's experience was a long time ago and do many things have changed now. Hopefully some one will come along here who can give you proper advice.

I really don't think that the time is right yet to start thinking about having another Baby, you can't replace the one you have as simply as that, oh lord I'm not sure I'm helping here. I'm just worried that your so raw at the moment your not thinking straight.

All I can do is offer you a big hug, but keep talking on here, there are lots of very kind wise people, listen to them x

Oh sweetie , (hugs) . You sound so very broken hearted.

I really think you should give yourself time , and go visit your baby as much as you can .

Lots of babies with downs grow up happy and healthy , I read about one wee boy who grew up and is now a teacher ...there is much better prognosis for downs people now.

I think your partners attitude is bound to be depressing you , and it's clear from the way you word your post that you love your baby and want the very best for him . Don't assume that you won't cope with your son at home , he might be a strong wee chap with little need for medical care .

My best friends nephew has downs ... He's got a shock of bright blonde hair and a very cheeky attitude ...and much easier to parent than his NT sister .

Once the shock of the birth and finding out your baby boy has downs wears off , you will be in a better position to cope. Talk to your midwife /Hv. Maybe you have a little post natal depression , so you have to look after yourself.

What's your little boy's name ? How big was he at birth ?

Tell us about him .

Wendy Sorry to hear about what you are going through. It can't have been an easy decision to put you son into foster care. Is it what you really want or is it your partners decision based on his experience of growing up with a brother with Downs Syndrome? As Boohoohoo says life for disabled children growing up now is very different to what it was 10 - 20 yrs or longer ago. No one on this board wil tell you that bringing up a disabled child is easy but most on here will tell you that they love their children dearly in spite of their disabilities.
My nephew who has Downs has just finished mainstream education and left school with 5 GCSE's. He has left home and gone to residential college at 16 where he is learning to be very independent and it is likely that when he leaves college at 19, he will live an independent life and hopefully have a job - possibly in horticulture, catering or retail (which are the subjects he is studying). He is a lovely young man and his parents are very proud of him (as the rest of the family are).
Having another baby now is not going to be the answer to your problems. It will not make you forget the baby you had and gave away. Neither is having another baby a guarantee that the next one will be perfectly healthy (I have a daughter with a rare chromosone disorder and my son was diagnosed with ASD at the age of 6).
Get some counselling, talk to your local or national Downs Syndrome group before making up your mind and most of all give yourself time before making any life changing decisions.
Good luck with whatever you decide to do in the future.

My friend nephew , let's call him Kyle (not his real name btw ) ...I'm going to tell you a wee bit about him .

Like you , his parents did not know until he was born . When he was born he had some surgery to correct a fault in his heart. He's fine now.

He has blonde hair , blue eyes the cheekiest smile and the funniest sweetest nature .
He has a large tongue , so he had trouble learning to feed , and later he had speech therapy and lessons in makaton .
He is also slightly autistic , so sometimes goes into the "zone"
Whilst in the "zone" he relives his favorite films , reciting them word for word .
He loves his sister and likes to make her daisy chains .

He adores his mum , and tells everyone his mummy is a special lady , because she has blonde hair like himself .

Kyle can make his own breakfast snacks , and sandwiches by himself.

He keeps himself clean , and is surprisingly tidy .

His favorite things are playing football and teasing his older sister .
He has many friends ,and as he loves to tell me is currently looking for a girlfriend .

He does most things other boys his age do .
Kyle is 13 .

Hi Wendy, I have a title boy of 20 months, he has downs and we also only found out when he was born. I can understand the shock you have just had. When you say you couldn't cope, was it just the idea of coping with a baby with downs or was there anything else? I can understand your partners reaction, but as someone else said things are much better now.

I can understand your reaction about having another baby, it was one of my first thoughts as well. But until you have resolved the future of this child, I don't think you will be able to move on. Feel free to pm me.

Agree with wipsglitter. You mist be in shock, please take time to resolve the future of your baby before considering another pregnancy. It shouldn't be your partners decision only... If you want to bring your child up yourself. So sorry you are going through this. Feel your thoughts should be with your baby before you consider another baby so soon.

29 09 , is that your baby's birthday ?

wendy I really feel for you. It's so difficult to come to terms with a disability, I think some kind of counselling might help you. Do you think your baby might be better off with you or is that something you have decided is not the case? Please take care of yourself and take time to come to terms with your situation. Sending lots of love x

wendy my heart goes out to you . No helpful words but sending big hugs x

You are still in shock and so is your partner. That little being you carried and loved for 9 months is not with you. Hormones alone will play havoc with your emotions so soon after giving birth, much less the bereavement you are currently dealing with.

It is a bereavement as it feels like the death of all the hopes, and dreams you had for that little being you carried. You need time to grieve, to cry and to learn to live with what has happened to your child, your future family life and your relationship with your partner.

Another child at this point in time would not be fair to anyone, least of all the new child, as right now you are all in a state of flux and turmoil. Neither is a pregnancy so soon after the last the best idea, simply because your body needs time to physically gather within itself all the nutrients and strength required to make a human being. (Think of how we are advised to take folic acid for at least 3 months before trying to conceive). If you do want another child, you owe it to yourself to be physically and emotionally as healthy as you can be before commencing another pregnancy.

From a callous, practical point of view, social services could interfere in ways you don't want if they feel you haven't fully resolved all your feelings and emotions towards this child before having another. They could jump to conclusions and make choices you don't agree with .

Take the time to get some REAL professional help to cope with your feelings and answer ALL your questions re your child's disability. If offered medication to help you in the short term, take it. Make sure your partner does the same.

The two of you may find you disagree about your child's long term future (you may eventually want to care for child yourself and find your partner does not or vica versa). Many relationships run their course when a disability enters the equation. Before having a second child you need the security of knowing your own relationship will weather the storm, and that any choices you make over this child's future (adoption perhaps?) are ones you can both live with in the long term. These aren't choices you can make while you are still in shock, you need time to let it all sink in.

5 weeks is no time at all in the 18-25 years it takes to raise a chilld from birth to independence. You had 9 months to get used to a reality that was brutally snatched from you and altered beyond comprehension overnight. Time doesn't heal all pain, but it enables us to learn to live with things. Please, please give yourself the gift of time.

wendy I dont know what to say and have no real advice. You are making a very difficult decision right now and it is so early and raw for you. You need time to grieve properly for the baby you were expecting to come into the world and then decide the future of the beautiful baby you have. Emotions and hormones will be running so high and it is hard to think rationally at such an early stage. It to me is way too early to be talking about a new baby. There is the possibility of the same thing happening and it is very hard for you now let alone coping with the possibility of a double blow.

Do you have other family to support you? I would definately see some sort of support in counselling.

I send you and your partner the biggest of hugs xxxx

I think bochead couldn't have it put better:

"
It is a bereavement as it feels like the death of all the hopes, and dreams you had for that little being you carried. You need time to grieve, to cry and to learn to live with what has happened to your child, your future family life and your relationship with your partner.
"

Start there. Then one step at a time.
Most of us here understand better than you think.

I am another parent of a child who is primarily down syndrome. I also found out after birth and that was after they found a heart condition. It is a shock to the system. I think you should take on board some of the advice here, especially the counselling. I also advise not to look at other parents perspectives but to look at the syndrome as a whole, from worst case scenario to best possible outcome. Look at any co morbid conditions and disabilities that can also come alongside a diagnosis of down syndrome. After the life we have had and by the sounds of your husband I don't blame you for your actions, however I do feel you may find the inner strength to cope. How do you feel about leaving him in care? How will you both feel in years to come? Only a counsellor can really help.

As for having another baby, have you also asked about the possibility of having another baby with DS? How would you cope with this?

I hope this doesn't sound too negative, it is hard and I don't relish the position you are in. Take care.

I have a disabled son with an anknown condition and he has 2 little friends aged 2 and 3 that have downs syndrome and they are the most happy, loving, cool little kids I have ever met. They always seem to light up the room! I think they tend to develop quite quick and meet their milestones and talk etc all of which im not sure my son will be able to do. I never knew my son was disabled until aged 1 so im not sure what would of happened if I found out at birth. I think it was pretty tough for me as I am 22 now and had him when I was 20. It does take a very long time to come to terms with the fact your child is different its taken me about a year or so, and it always takes longer for the dads to come to terms with it as mothers have a special bond with their child.
There is a grievence to deal with but at the same time my son is my ray of sunshine and he has shown me a completely new way to love that I never new existed and I love him more and more each day. Parenting is just a little different for us but all the little things mean so much and they make you so happy when they achieve something. You just take each day as it comes really. I think you appreciate things more than you would with a "normal" child. I understand that its not for everyone and you really need a supportive family that will help you along the way. Please dont let other people put negative thoughts in your head just go with your heart and what you think is right for your son. I think all disabled children need is a loving family that adore them and love them for who they are :) and grandparents to give you time off! Your heart does heal over time but of course everyone gets their ups and downs about it. There is help and councillng and support workers that see you every few weeks to help with any worrries.

Also as downs syndrome is the more common disability there are loads of support groups out there that you could go to through your health visitor and maybe meet other mums that have been in the same situation. Talking to someone in the same boat as you makes you feel 1000 times better and I think it would really help. They usually run once a week too :)

It's very hard to comment, as each situation is so different - as I understand it Down's Syndome is a spectrum, so children's development and abilities can vary massively, so as dev has said, individual anecdotes may not be that useful. And the level of support for parents is different as well - both officially and unoffically from friends and family. I agree with other posters that you need more time and space to think things through, and about what you want.

Not all children with Down Syndrome meet their milestones, are sunny natured and happy children.

Down Syndrome is a very wide spectrum and I do not think generalizations and sterotypes are particularly helpful.

wendY I dont know what to say to you except I hope that you find a way to come to terms with whatever happens in the future.
It is very early days for you just now. There are options for you that perhaps can be discussed when you feel able.

Long term foster care with contact, open adoption and kinship care are three if you really cannot care for your son yourself

I sincerely hope that you get the right support to help you work through this.

Hi so sorry to read your dilemma. I am an adoptive mum of 3 DC's with Down Syndrome no I am not going to say anything negative about you.I have often thought what if I had given birth to a DS baby would I have felt the same--I really do not know and no one should judge until they have walked in your shoes.
I would also like to add not all DS are loving,well behaved and like music;I would love a penny for every time that has been said to us!
On the plus side my 3 have brought us immense pride despite being little sods sometimes.But I know they will never mug old ladies, take drugs, come home pissed and throw up over your new carpets etc.
You will have to make your own decision but hold your heads up high and ignore other people interfering. Also listen to other peoples advice (you will get loads) take in what is useful and bin the rest.
Take care xx

you may be interested in having a look at this Down Syndrome research paper collection

Wendy , i hope your ok .

You`ve not posted back , i hope its because your busy sorting things out.

Even if you do decide that fostering or even adoption is the best option for your wee boy , please come back to the thread.

As parents of SN children , we often have to make difficult and heartbreaking choices , but we do it because we have to do the best wee can for our wee ones .

If and when you do decide to try again for another baby , there are some mums here who will help you through that too ... ((hug))

Hi Wendy, I'm a mum of a 19mth old dd with Down's. Like you I had no idea until she was born & it is one hell of a shock when you first find out. My first thought was also we need to have another child asap to look after dd when she is older, but that really isn't the answer. You need to give yourself time to come to term with everything; I'd also recommend counselling, whether that is with your HV or a referral from your doctor. Take care of yourself & if there is anything you want to ask, but don't want to do via this board, then please feel free to PM me.

Hi Wendy,my heart goes out to yours.I have a child with downs and I remember so clearly the shock and grief at the begining.It is so much like a death and the truth is every thought runs through your head all of which is normal to feel...don't feel bad about that.Don't feel bad about foster care or anything that you are feeling or doing because there is no right way only your way and that is all that matters xxxxI wish I could come round and sit with you and give you some support at this time.I think we all do.Let us know how you are getting on, we are all here for you xx Just get through a minute at a time that's all,just a minute at a timexxxxxx