Down syndrome confirmed

(74 Posts)
Umanayana Tue 14-Jan-14 20:27:06

We had the results from our Cvs today and our precious little girl has down syndrome. We are very undecided about how to proceed. My heart wants to keep her but my husband is very unsure. We have three other children, two teenage boys and a toddler daughter. This is to be our final pregnancy, whatever the outcome
I would appreciate any advice/experience s. Particularly from any parents of children with down syndrome. Thank you wise mumsneters.

Umanayana Tue 14-Jan-14 21:26:46

Anyone?

Matsikula Tue 14-Jan-14 21:29:10

I don't have any helpful advice to offer, but wanted to make sure you got some replies.

It's hard news to get, but you both might feel differently when you have had some more time to absorb it.

Andcake Tue 14-Jan-14 21:31:39

I am sure some one will come along soon. Maybe post in special needs.
It's a tough one.
I have a downs nephew. ( discovered at birth) he is wonderful but has many difficulties which put them under a big strain. There is also a worry about asking care long term. But he is a joy.
Good luck and a bit of hand holding whatever you decide.

makesamesswhenstressed Tue 14-Jan-14 21:32:06

Have you tried looking at Future of Downs? It's run by parents of children with Downs Syndrome and you might find it helpful to read some of their accounts before making a decision.

I feel for you. This is something I am very conflicted about and I hope you can come to a decision you're at peace with x

Viviennemary Tue 14-Jan-14 21:33:10

I also saw your post and didn't want just not to reply. It is an incredibly hard decision to make and only your and your DH can make it together. I agree with taking some time to think and discuss before making any decisions.

makesamesswhenstressed Tue 14-Jan-14 21:33:59

Andcake - I always thought families preferred to say child/nephew/girl with Downs rather than Downs child/nephew/girl. Have I got that wrong? What does your sibling prefer? I would hate to be inadvertently upsetting people by using offensive terminology

Matsikula Tue 14-Jan-14 21:34:57

How old are your teenagers? Are they likely to be supportive? One of my friends grew up with a sibling with quite severe learning and health difficulties. I know that he was able to be a big help, and he does not resent it, though now his parents are getting older he is more worried.

NightCircus Tue 14-Jan-14 21:37:01

Can they give you an idea of severity of physical problems?
The fact that she has several siblings is a positive....I'm really not sure what else to say.... You never know what genetic package your child will have, a colleague who is an expert in autism, adopted a child with Down's syndrome. I remember her saying she had a much easier time than many of the parents she worked with.

Andcake Tue 14-Jan-14 21:48:14

Must admit the language has ever come up in conversation. We just call dn by his name. I'm sorry if I've offended anyone.

Dromedary Tue 14-Jan-14 21:48:39

The Downs Syndrome Association has guidance on their website for people who are in your position. And they have a helpline for factual information. Maybe you could contact your local Down's Syndrome group to meet parents. But it's a difficult one, as you will be talking to people who have made that particular choice and may want to be as positive as possible about it.
Have you tried asking on the disability part of Mumsnet?
Good luck at such a difficult time.

Christmascandles Tue 14-Jan-14 21:54:26

Hello OP, no advice from a parents perspective, but I used to work with young downs adults and they were all a joy. Many of them lived away from home (not because they couldn't, but because they lived in at college) they were supported, but did have a degree of independence. They also had a good social life!

Some had some health conditions around poor eye site, they wore glasses as I do

One young lady I remember was very knowledgeable in the subject matter. Some worked very hard, others like to do colouring with me

I've never been in your situation and I cannot honestly say what I would do in the circumstances. However, I just wanted to share a little of my experience with you. I know it's not the same And I'm sure some of these families will have had challenges, but I wanted you to know it's not all doom and gloom.

Here to drink brew with you x

Hi, I had amnios with both my children and had negative results. The reason for having them was because my older disaster has Downs, she's 45 now and starting to show the early signs of dementia (everything speeds up aging wise with DS). I would not have continued with the either pregnancy if we had had a positive result. I see each and every day the struggle that life is for my sister, luckily she had had no other medical complications other than a heart murmur, but it's not about health it's about society. I worry when she walks for the bus. I've had to fight to help keep her day service open. My DM was accused of lying about how disabled she was as a child. My DM is still her carer at 65. She will never live independently. I would hate for her to go into a home (we've all seen those reports) so she will come to us if my DM dies before her.

Sorry posted too soon.
She has however taught me to be compassionate, caring and I'm am fiercely independent because my parents had to spend so much time looking after her when I was a teenager. If you decide to go through with the pregnancy you will have to fight every inch of the way every day for your DD.
If you want to discuss it further feel free to message me.

Umanayana Tue 14-Jan-14 22:10:38

Thank you all for posting. Trying to sleep now but I will reply properly tomorrow. Its so nice to know that there are people out there thinking of us.

23balloons Tue 14-Jan-14 22:12:25

I have a sibling with down syndrome. Nothing is easy when you have a disability, dm's life has been dedicated to fighting for resources for him since the day he was born. With the cuts there are less and less options depending on the level of need.

You need to think about the whole family and the impact a child with downs will have on you all. If your family is supportive it will be a lot easier to cope. Some downs children have few problems and others have many. My brother cannot read, write, communicate or travel independently meaning he needs 1-1 care 24 hours a day. I hope you reach the right decision for yourself & family x

lalamumto3 Tue 14-Jan-14 22:16:39

Hi umananya, I have a teenage daughter who has Down syndrome, we did not know until she was born, therefore I have not been where you are now.
However I can tell you that we are a very happy family, and that we have 2 other children. Our daughter brings fun, joy and laughter to us. She is just part of our family, dearly loved by all us including her siblings.
Any questions please pm me.
X

SaggyOldClothCatPuss Wed 15-Jan-14 00:52:14

I don't know if it will help, but this was my thread back in November.

SaggyOldClothCatPuss Wed 15-Jan-14 01:01:55

Theres lots Id like to say, I hope you don't mind, I'll PM you. In case you don't know, click on the small yellow envelope with the red dot ^^up there, or select private messages from the main menu on the APP. smile

Shellywelly1973 Wed 15-Jan-14 01:15:15

Op. My heart goes out to you at this incredibly difficult time. Saggy' s thread will help you... Information is the only way to deal with this situation.

I have 2 ds with ASD. God only knows if someone told me 5 years ago how my life would turn out, I wouldn't have believed them.
.
My older ds is quite severe. He attends a special school & is unlikely to live independently. I adore him. I mean I'm passionate about his education etc. Don't get me wrong I also adore my youngest ds but he feels 'easy' inccomparison!

The thing is I'm pregnant now. I had a cvs. If it showed DS etc I had decided not to continue with the pregnancy. Some will say I'm a hypocritical but the reality is you will be your child's carer. It's the most fulfilling & joyful experience but also exhausting & never ending...

Contact the Downs Association. PM Saggy. Gather information & trust in yourself to make the tight decision for you & all your family.

Thinking of you. Take care. x

Shellywelly1973 Wed 15-Jan-14 01:16:28

Sorry right decision not tight!

realnappiesmum Wed 15-Jan-14 01:54:21

Hi my little girl has down's syndrome. We found out at 21 weeks. She's just over a year old now and is truly precious. She is absolutely adored by her older brother and she adores him back although she has recently discovered that she loves to pull his hair!! She is very determined and cheeky and has a megawatt smile which melts many a heart.
I have found Future of Downs Facebook group so supportive over the past year and a bit,everyone on there is so knowledgable and I've made some great friends on there.They have website too;can't remember if you join Facebook group through their website. There are some expectant mums on there at the moment.

Lydiejo Wed 15-Jan-14 02:07:15

My heart goes out to you. I hope you can find peace. I know that I would never be able to terminate a pregnancy, I would always wonder about my dear precious child.

Umanayana Wed 15-Jan-14 19:29:54

Thank you all so much. I have read all your posts and pms. I will reply to all personally when I am not on my rubbish phone! I am so touched that so many people have taken the time to share their experiences and offer advice and comfort to a complete stranger. You are a pretty amazing best of vipers!

Umanayana Wed 15-Jan-14 19:31:01

Nest!

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