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!

SaggyOldClothCatPuss Thu 16-Jan-14 21:52:33

How are you doing Uma?

Four4me Sat 18-Jan-14 17:10:13

Hi there, our dc1 has Down's syndrome that was diagnosed at birth. He is 10 years now and amazes us everyday. We have had three more dc since him, he is just one of the gang and honestly wouldn't change the extra chromosome for the world. Although it did take some coming to terms with in the early days as I was 27 and no screening to prepare us!
Luckily he is healthy and no significant problems, just taken longer to reach all his milestones (walked at 2.5, pants at 5 by day and 8 by nighttime etc) he is in year 5 at our local mainstream school and has surpassed everyone of our expectations already, so the sky's the limit. He is often the easiest one of our dc. He is funny, kind, well behaved, empathic, cheeky, charming and lazy (basically your average 10 year old). He is most definitely the big brother and he and our ds2 who is only 14 months younger than him are overwhelmingly close, having a sibling with sn has definitely not had a negative effect on any of them, the opposite in fact.
He has taught is all lots of valuable lessons about never believing there is a limit to ability when you are determined enough.
Feel free to pm me if you want to ask anything. I now have many friends with children who happen to have DS. Good luck smile

Yes, how's it going there Uma?

My stepson is a Downs boy (that's how his Dad refers to him, so that's what I use), and is a wonderful addition to our lives. He brings out the best in other people.

I had an uncle with Downs when I was growing up, so I can compare the treatment available then and now. My stepson's quality of life is great - he's reasonably vocal, loves musicals and theatre, spent a magical 18th birthday at Disney, enjoys cooking (we're making pizza for dinner together), and making lego models.

Now, every child is an individual, so my experience may not be other peoples. It's certainly no picnic, and the tough decision you have is incredibly difficult. <hugs>

caketinrosie Sat 18-Jan-14 17:40:28

Hi I have two SN dcs who are 12 and 15. They don't have downs so I'm no expert there, I do feel I'm an expert in survival though! The last twelve years have been the hardest most heartbreaking devastating time in our lives. My dh and I at times were almost at breaking point but somehow through the support of others thank you Pinot Grigio and some kind professionals we have got through their formative years. And we have survived, as you will if you choose this path. There will be times you will be on your knees with grief because you grieve for the child you expected and lost and you will grieve for your old life. But eventually you find a new normal that fits your family and you become tough and resilient and sometimes you will get it wrong and sometimes you won't. Some days will be terrible some days the laughter won't stop. Everything your child does will amaze you, everything they do you will never take for granted. If you do decide to continue and the decision must be yours only, be aware it's a roller coaster ride but it won't always be so hard. I wish you didn't have to have this awful decision to make, but whatever decision you make will be the right one for you. I have no regrets at all, but I'm not you. Good luck op xx thanks

YesAnastasia Sat 18-Jan-14 17:51:04

I honestly don't have advice for you, just wanted to add my support to you and your family.

The one thing I would say is, and perhaps it's controversial to say this, if you make a decision for someone else, you will regret it. You have to be sure so that you can be at peace with yourself in future tough times. Be true to your heart either way.

I wish you & your family love & strength.

googietheegg Sat 18-Jan-14 17:56:48

I've not been in this position thankfully, but I just wanted to add my support. Think about the decision you are making at various times in the future - tomorrow, when the child is 5 or 15, when the siblings are 30 or 40, if you get ill. Think of yourself, all your children and do what you think is right both in your heart and your head. Good luck.

lougle Sat 18-Jan-14 18:10:15

Congratulations on your pregnancy. I'm sorry you're having to think about whether you should continue it. I just want to say that services for children with Down's Syndrome have changed hugely over the years. Most babies born with Down's Syndrome have a comprehensive care plan from day 1. Portage, physio, OT, SALT, etc., all starts really very early.

I have pointed this out because, for example, my DD1 who is 8 at special school, didn't even get picked up as having Special Needs until she was 2 years and 9 months old. That was almost 3 wasted years.

I hope you get some great advice.

Umanayana Sat 18-Jan-14 22:17:57

I don't have the words right now to respond to all your wonderful messages and pm s, feeling totally overwhelmed still! But I promise I will reply as soon as I am able. Thank you all so much x

DrewsWife Sun 19-Jan-14 01:25:24

I am new to the site but not to additional needs. I have a child with rheumatoid arthritis. It was explained time this way..

You have been told you are going on an adventure. You board a plane to Italy, you plan all the sights you are going to see and make a list. You compare your list to that of others travelling to Italy.

On the way the plane is diverted. You land in Holland and you get angry. You see flat land where there should be steps and ruins and street music.

You list all the sights you should have seen but if you stop and look around You will see that holland isn't so bad after all there is lots to see and do.

It's just at a slower pace. But you have time to catch your breath and smell the flowers. It's less crowded, you cycle or take a bus instead... It's not a bad place. It's just different.

My husband works with special needs. One of his charges is a 19 year old with Down Symdrome. He sees delight in everything. He is very much a typical teen. Watches too much telly. Wants to go out with his friends, yells at his mum. Slams doors.

We also adore 3 Down's syndrome folk at church. Each like us has their own personality. And I adore them all.

BobbyGentry Sun 19-Jan-14 02:34:43

Try contacting ARC www.arc-uk.org/

They offer impartial support for expecting parents.

Difficult times and there may not be a right answer or reason, sorry.

(((keeping you all in my thoughts)))

BobbyGentry Sun 19-Jan-14 02:36:55

ARC's helpline 0845 077 2290

"ARC is the only national charity which provides non-directive support and information to expectant and bereaved parents throughout and after the antenatal screening and testing process."

SaggyOldClothCatPuss Sun 19-Jan-14 11:28:09

I love that poem. It really made me feel better when I discovered it.

lougle Sun 19-Jan-14 13:29:05

It's a poem which evokes strong reactions in most people who read it. It is quite polarizing, I find.

WipsGlitter Thu 23-Jan-14 07:23:19

I have a son with DS. We found out when he was born. It was a big shock at the start but we love him to bits he's just turned four and is at mainstream nursery. He has few additional health needs. He's just started swimming lessons! Things have changed A LOT in the past 40/30/20/10 years. I don't feel I've had to "fight" for anything for him. Everyone loves him! There's a bit about him on my blog here (scroll down)
blog

WipsGlitter Thu 23-Jan-14 07:25:11

Oh the poem! I personally don't like it (sorry saggy!!). I prefer to think in the terms of I'm in Holland, but I'm not a prisoner here and I can still go to Italy if and when I want!!

soucieusemum21 Thu 30-Jan-14 18:55:39

Hello, I am 31 years old, this is my first pregnancy, I am 12 weeks pregnant and just discovered that my harmony test was positive, >99% chance of down syndrome and the scan confirms a very large nuchal translucency 8mm back of the neck ... quite impressive on a scan... I will have the CVS done tomorrow and do not want to watch the scan anymore, I just want to know the result... but I am sure it will be positive... What else could it be?
It is hard when you see your baby moving in the scan, to really be happy and then go back to reality... at 10 weeks the nuchal translucency was already high, 6mm and I thought that the person who did the scan was silly to already start worrying me... I was so mad at her... but actually she was right! I realised she had to say it as a precaution. Sometimes the nuchal translucency resorbs itself and goes back to normal like she said, around 3mm other times it increases with the baby, which means the symptoms are still there and it is confirmed with the blood test result...

My sister has Prader willi Syndrom, which is a genetic disease 15 chromosome is affected. I cannot keep my baby if it has down, I will need to look after two people with disabilities and it is too much.It is so hard. You really need to consider that it is a whole life and it is very very hard. Yes like my mother says, they bring joy and you love them very much, but my mother who is the most loving person with my sister was the first person to tell me that I should not keep my baby.
It is so hard on us, on the couple, on them, on everyone else. Especially when they get older and then you worry who will look after them.

I will try to get help after the CVS and see someone to talk to as I am quite depressed.... I am stressed I will not fall pregnant easy afterwards, that I will miscarry that my next baby won't be healthy either.... I do not know when I will be able to try and conceive again... I see everything dark right now sorry if I bring a gloom atmosphere to this chat...

nyldn Fri 31-Jan-14 11:14:27

I'm so sorry Soucie....

Monten Fri 31-Jan-14 21:15:28

I'm so sorry soucie and OP that you are going though this. It's just shit.

Soucie - I know what you mean about feeling bleak. I had a tfmr two weeks ago after an Edwards diagnoses for my boy. At the moment everything seems awful and I'm filled with fear for ttc again and what might go wrong.

But I have faith that better times are ahead - and there are better times ahead for you both too. Sending you both good thoughts

BunnyBaby Fri 31-Jan-14 21:24:01

I'm also thinking of you, and could never terminate whatever the outcome, you yourself refer to her as 'our precious little girl'. I'm looking at your words precious. People can be born healthy, and lose their health in an instant. I doubt many of the parents of those who acquire childhood illnesses, or do not make it through childhood think 'if I'd have known they would have only made x years old, I'd have terminated'. What makes one life more precious than another?

grobagsforever Fri 31-Jan-14 22:45:24

Bunnybaby your post and attitude are not helpful or appropriate for this part of mumsnet. This section exists for non judgemental support. I hope you never have views tested.

BunnyBaby Fri 31-Jan-14 23:26:00

I'm not being judgemental gro, this is a chat for people to post their thoughts, mine is that every life is equal, but I have never said that everyone should have my opinion.

lougle Fri 31-Jan-14 23:48:08

There are times when you need to read a post and realise that to post your views will cause distress to that poster.

I hope that you are able to get supportive advice, whatever your decisions, uma and souc.

grobagsforever Sat 01-Feb-14 08:16:08

No bunnybaby its a thread for a poster who is looking for support, it's not a discussion on the rights and wrongs of abortion. If you'd posted this on my recent thread in this section I would have been upset. If you want to debate abortion that's fine but please go to the appropriate section of mumsnet.

BunnyBaby Sat 01-Feb-14 08:59:20

Gro, I'm not talking about abortion, simply all the incidences where a life can change in an instance, at any point in that life

SJisontheway Sat 01-Feb-14 09:15:26

Hi Uma,
Sorry you are in this position. I would not judge anyone, whatever decision they made.
My eldest has angelman syndrome, which leads to severe learning difficulties. I also have 2 other younger children. I would not change a thing. My dd is wonderful and has enriched all our lives. Life is good. We have a very happy family. My younger kids truly adore her and I firmly believe are better people for having their sister in their lives. Dd2 in particular has such a strong bond with her sister, and insists she is going to be a speech therapist when she's older so she can help people with disabilities.
On the other hand, I have to acknowledge that things have only worked out so well thanks to amazing support from my family. DH is amazing, and very involved. My parents are close by and are incredible. I had to change careers when she was small. I still work, but in a much more flexible role. As it happens, this has worked out well, as I much prefer my new career, even if the pay is much lower. Again, I am very lucky. I do worry about the future too.
I know the Holland poem divides opinion, but it has always resonated with me. I love Holland.

BunnyBaby Sat 01-Feb-14 10:26:39

Just so no one thinks I'm being hypothetical my brother survived a condition only uncovered at age 15 and had a lot of interventions until 30, also I have 2 cousins who have a different condition which killed one at 8, the other, thanks to GOSH and bone marrow transplants is a healthy adult. I know lots of downs adults with excellent support leading busy lives (I volunteer with a group), whereas members of my own family who would have shown as 'perfect' on scans have had their health taken away from them in an instant.

lougle Sat 01-Feb-14 14:51:47

BunnyBaby, that's not the point though is it? Whether you agree with it or not, women do have the choice as to whether they continue with a pregnancy when medical conditions are known to be present. At this point in time, women do not have the choice as to whether to end the life of their child who later develops/is diagnosed with a condition. The fact that life can be changed in an instant for anyone is irrelevant.

If someone has a prenatal diagnosis they have the right to choice. It's deeply insensitive to post your opinion about it once someone has disclosed that they have TFMR.

BunnyBaby Sat 01-Feb-14 15:48:35

Lougle, at no point have I said that no-one should be entitled to make their own choice, and at no point have I said I'm judgemental of those who make any choice, so your comment confuses me?!

lougle Sat 01-Feb-14 15:51:22

Read the post you made, straight after Moten's post. Now think of how it could (perhaps must) have made her feel?

BunnyBaby Sat 01-Feb-14 16:02:31

My post to Uma was made with the best of intentions and in response to her original post which started the thread. It makes specific references to her post.

Chewbecca Sat 01-Feb-14 16:10:58

Hope you are ok Uma. Haven't read the whole thread but I wanted to recommend a Facebook page I follow (if you are on FB), it's called 'Down's Syndrome - Raising Awareness and Shifting Attitudes'.
It might be an interesting read in your position I think, it certainly describes the ups and downs of the journey they've been on over the last few years and gives a detailed, realistic view of their lives.

soucieusemum21 Sat 01-Feb-14 17:55:26

Thank you Monten and Nyldn, Tuesday will be the result of the CVS. CVS was done really fast, it takes less than 15 seconds if the baby is positioned well- not what I expected.
In the scan it shows that I have 1/2 chance of down syndrome +> 99% harmony came back positive for down, it also showed that there is liquid below the skin (around the chest) which might suggest heart failure and chances that the baby might not survive much longer. As the ob said "baby is not healthy no matter what the result shows..." I do not know why in a way I felt relieved to know that. I feel like it was not meant to be. It is so hard to have to make the choice and sometimes it feels better if it comes naturally...

I am trying to think positive as well for better times ahead. Good luck to all!

TelephoneTree Sun 09-Feb-14 21:58:20

Hi - only just seen this. We have a gorgeous boy with DS who will be 3 on Tuesday if you would like to PM me or me PM you? x

alizeeod Wed 12-Feb-14 21:44:05

Hi OP, my heart goes out to you.
I do not have children yet (hopefully soon!) but thought I'd tell you what I think for what it's worth.
I'm a nanny and looked after a toddler for a year (last year) and his older brother has DS (he is 10). I had a conversation about abortion with his mom once and she told me she was strongly against it (I'm pro-choice).
To be honest, I witnessed this family's life daily for a year and if you keep this baby, I hope you are aware of what you'll put yourself and your family through.
This child had leukaemia as a baby, then open heart surgery, he goes to hospital regularly because he is always very poorly, he's also very aggressive (I've seen him throw knives at his brothers), cannot go to the bathroom unassisted, and is generally a nightmare.
You can tell his mom loves him but is so very stressed out and constantly worried/exhausted.
I personally would not keep a child with DS as its not a life for them in my opinion and my life would be over, you pretty much have to be a carer for the rest of your life.
My aunt who is in her mid forties terminated a pregnancy at 5 months after finding out the baby had DS. It was her first child and she'll probably never have children now.
You have other kids, so I guess take comfort in that if you decide to terminate the pregnancy.
Good luck!

TelephoneTree Wed 12-Feb-14 21:55:35

I think each child is different, with or without DS. For every health problem / issue that may or may not occur with a child with DS, I personally know a typical child who has one or more of these.

Food for thought.

Signing up to be a parent is actually all you can control….

TelephoneTree Wed 12-Feb-14 23:06:03

alizeeod - what you have described is absolutely not the case for all children with DS, or even the majority. In fact - what you describe is the first time I've heard that out of lots of children with DS that I have met...

alizeeod Thu 13-Feb-14 01:11:58

TelephoneTree, I'm not implying all children with DS will be as difficult! Just giving OP insight into what my personal experience has been, as most comments make it sound like raising a child with DS is a cake walk.

TelephoneTree Thu 13-Feb-14 10:06:37

I'm not going to say too much as I don't know what Uma decided as she hasn't reappeared on this post but I will say that you stated that your life would be over if you had a child with DS and that you don't believe it's a life for them (your opinion I know) and that you hope she would know what she would be putting herself and her family through….

I think you are basing those statements on your experience of one child? Please don't make statements like that as fact, as they are simply not true. You are wrong. By all means present what you have observed and have an opinion on it but just be careful…..there is a whole world and life out there that you have no experience of.

TelephoneTree Thu 13-Feb-14 10:07:24

and for what it's worth, I am very pro choice and people must make the decisions that are right for them. I would hope that they are based on reality rather than misconceptions though.

realnappiesmum Thu 13-Feb-14 21:03:28

Alizeeod, as a mother to a beautiful girl with downs syndrome I am very very hurt by your sweeping generalisation of all children with DS based on one child you have met. Your prejudice is an absolute disgrace.

mummaxmas Thu 13-Feb-14 21:18:34

I feel for you, a mother always wants her baby but circumstances make her doubt her desicision.
It will be hard and she may have health problems, but she will love you and you'll love her and so will everyone else when she arrives.
It's always the mothers choice, whatever you decide make sure it's your choice x

puppythedog Thu 13-Feb-14 21:25:52

I wanted to post simply to send the hope that you are able to find the right answer for you.

If I can offer my counsel find out as much as you can about what the consequences of continuing with your pregnancy would be but also the consequences of ending your pregnancy.

I'm not sure what I can offer being a man in this discussion. Mrsthedog and I have conversations about this, there is a close familial experience of severe learning disability. We don't find an answer other than to hope we don't have to think about it.

The very best of luck to you and you other half in you future.

Yani Thu 13-Feb-14 21:50:53

I've read through all the replies and think you have got some sound advice.

My younger dsis has ds. Although I believe she is fairly high functioning.i.e. she can wash, dress, cook simple meals, catch a bus etc

My father left us because he couldn't cope with having an imperfect baby. My dm went into protective overdrive and never really stopped!

My dsis lives semi-independently with another special needs friend, their carers come in three times a day to help. Their carers are absolutely amazing. My dsis is invited to all the careers family gatherings, has been taken on holiday with them and has given my mum total peace of mind.

My dsis is one of the happiest, sunniest, loving and giving person you could ever wish to meet. She is extremely content and secure.

However, I grew up resenting all the attention my dsis had. Every family decision revolved around her and her needs/limitations. I feel that I was sidelined somewhat. As another poster said upthread it made me very independent and I ended up leaving home when I was 17. My sister and I are not close, but I love her dearly.

I feel for you as the decisions you are facing are far-reaching and extremely difficult.

alizeeod Fri 14-Feb-14 03:10:30

I am certainly not prejudiced thank you and never said in my comment that all children with DS have behavioural problems like said child. I just shared my experience because all other posters make it sound like raising a child with DS is easy, which it clearly isn't! I felt OP needed to hear the bad as well as the good.

alizeeod Fri 14-Feb-14 03:28:20

I think reading through Wikipedia's DS page like I just did would be something to consider OP as it will give you an UNBIASED and realistic idea of the challenges you WILL face raising a Down's child. It lists all the health and behavioural problems, life expectancy, average IQ etc
It also says that most pregnant women who discover they carry one terminates the pregnancy, so I'm clearly not the only woman who thinks this way.

realnappiesmum Fri 14-Feb-14 06:52:27

Anyone who wants up to date and unbiased advice and information on downs syndrome should refer to the Downs Syndrome Association or to online support group such as Future Of Downs which is run by parents of children with DS for and should not refer to Wikipedia.

TelephoneTree Fri 14-Feb-14 13:07:28

Alizeeod, a poster has told you that your comments have been very hurtful so usually one would respond with some sort of acknowledgement of that rather than more aggression.

Realnappies, I agree. To get a good overview of any 'syndrome' in practical terms then the sensible way forward is to collate as much info and views as possible from the families of those with experience. Then one can make a more informed decision (whichever is right for you) based on reality rather than fear or old fashioned information. It goes without saying that you may be that you may either wish to terminate, or you may not!

pinkpip100 Mon 17-Feb-14 01:03:03

Alizeeod, I also found your post very hurtful and offensive. As the op asked for comments from parents of children with Down's syndrome it was fairly likely that a few of us (my dd was diagnosed at birth) would read what you have said. Your experience is of one child with ds, and therefore not reflective of all (or even most) children. It's also not helpful to the op to use scare tactics by saying things like 'I hope you're aware if what you'll put yourself and your family through' hmm.
Op, I'm really sorry you're going through this. As others have said, there is no right or wrong answer, just what you in the end feel is the best for you and your family.

Although having a baby with additional needs was not what we expected or indeed hoped for, and certainly brings added complications, our dd also brings us a huge amount of happiness and I couldn't imagine life without her. I have 3 older children (aged between 9 and 5) who adore their little sister, and - so far- I feel that our experience has brought us closer together. I know there will be things I have to fight for on her behalf as time goes on, and we don't know what her future will hold (although do we know this for any of our children?), but I don't feel as though any of our lives will be ruined by having her here. Times really have changed, and there is so much more help and support out there.

pinkpip100 Mon 17-Feb-14 01:05:26

Gosh sorry, I have just realised that this thread was started over a month ago. Op, my thoughts are with you, whatever path you have chosen.

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