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Antenatal tests

Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

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Original poster

Down syndrome confirmed

73 replies

Umanayana · 14/01/2014 20:27

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.

OP posts:

Four4me · 18/01/2014 17:10

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

MelanieCheeks · 18/01/2014 17:19

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.

caketinrosie · 18/01/2014 17:40

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

YesAnastasia · 18/01/2014 17:51

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 · 18/01/2014 17:56

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 · 18/01/2014 18:10

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.

Original poster

Umanayana · 18/01/2014 22:17

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

OP posts:

DrewsWife · 19/01/2014 01:25

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 · 19/01/2014 02:34

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 · 19/01/2014 02:36

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 · 19/01/2014 11:28

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

lougle · 19/01/2014 13:29

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

WipsGlitter · 23/01/2014 07:23

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 · 23/01/2014 07:25

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 · 30/01/2014 18:55

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 · 31/01/2014 11:14

I'm so sorry Soucie....

Monten · 31/01/2014 21:15

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 · 31/01/2014 21:24

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 · 31/01/2014 22:45

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 · 31/01/2014 23:26

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 · 31/01/2014 23:48

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 · 01/02/2014 08:16

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 · 01/02/2014 08:59

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 · 01/02/2014 09:15

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 · 01/02/2014 10:26

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.

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