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just found out unborn baby has down syndromme help

(104 Posts)
bubbles3037 Wed 07-Feb-18 13:41:43

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

beckymad1x Wed 07-Feb-18 13:42:16

Why are you panicking? What do you want to do?

brokeninmoreways Wed 07-Feb-18 13:44:01

Deep breath

Sit down. You’re in shock.

Anatidae Wed 07-Feb-18 13:47:04

You should be able to talk to someone via your midwife.
What you and your partner decide to do now is up to you. Children with down syndrome range from very severely affected to very mildly affected, and can live quite healthy lives. If you decide to continue you will be offered more scans etc to see if the Baby needs any specialist treatment at birth (a small number of children with downs have cardiac issues that benefit from immediate treatment.)
Or you may decide not to continue and again that’s entirely your choice as well. What you need now is some calm impartial advice - talk to your midwife and ask them what advice is available to you. The choice you make to continue or not is entirely your own - this is a subject people often have very strong feelings about. Their feelings are irrelevant- only you and your partner can make this choice. I wish you luck whatever your descision is.

Hadron21 Wed 07-Feb-18 13:47:53

You’re in shock because what you’ve planned in your head is going to turn out differently. That’s the first thing you need to come to terms with.
The rest will follow. If you choose to progress with pregnancy you’ll have six months to prepare.
If you don’t then the next few weeks will be tough but you’ll get through them. Did the hospital offer support or advice?

bubbles3037 Wed 07-Feb-18 13:48:50

im 37 so no spring chicken and im keeping it but dont know anything about down syndromme and hospitals not very helpful

MyKingdomForBrie Wed 07-Feb-18 13:50:10

Have a look at this website and read the stories from other parents there.

Do not panic. DS is not at all like the popular misconceptions, it’s really nothing to be scared of.

Be kind to yourself, contact someone from the website for a chat and don’t be afraid to be honest with your feelings.

XJerseyGirlX Wed 07-Feb-18 13:50:14

Let the news sink in first before you make any decisions
Do you know anyone that could put you in touch with someone that has a downs syndrome child or know of a group that could offer support?

Find out what having a child with Downs means, what struggles you may have to overcome? From my knowledge a full happy life can be lead (but ive not first hand experience)

Good luck OP, I hope you have someone supporting you

XJerseyGirlX Wed 07-Feb-18 13:54:23

That link is lovely :-)

ShowMeTheElf Wed 07-Feb-18 13:54:35

Down's Association
downs heart group
NHS page

A child with Down's will look a bit or a lot different. A child with Down's will have a lesser or greater learning disability. A child with Down's is more likely than average to have congenital heart disease.

That is all you can be sure of really: every child is different, every parent is different. There will be parents who cannot imagine their lives without their Down's child. There will be those who knew that they wouldn't have been able to cope and don't regret their decision.

Only you know yourself, your partner, and you will get more information about your child's physical health issues as the pregnancy progresses.

bubbles3037 Wed 07-Feb-18 13:56:23

thank you and im keeping the baby no question it deserves the chance at life im just not getting any infomation as i have decided to not have a needle that can cause me to misscarry as i have had multiple miscarrages in the past and also 1 ectopic so this is a miracle baby but the hospital have basically said they will deal with it when the babys born and keep apolgising like its a death sentence i honestly feel lost

MargoLovebutter Wed 07-Feb-18 13:57:28

bubbles3037,as you've said you're going to keep your baby, try the Down Syndrome Association. You may also find their are local support groups too, such as Extra21, which operates in Essex.

FWIW, and because you've said you're going to have your baby, my cousin, who I'm very close with has a beautiful 2 year old daughter with Downs and she is an absolute joy to all her family. She had some health issues when she was born but she made a full recovery and she is doing really well now.

StealthPolarBear Wed 07-Feb-18 13:59:13

If you have decided to keep the baby then you need to get practical and tell the hospital to stop saying sorry!
Congratulations grin

Shadow1986 Wed 07-Feb-18 14:04:06

Are you on Facebook because there are numerous community pages on there for parents of children with Down syndrome. flowers

Backenette Wed 07-Feb-18 14:04:20

Well if you’ve made your mind up then what you need is information on what to expect. smile your midwife should be your first port of call.

Have you had a positive confirmation? Ie a NIPT test? Or just a triple test?

There is a small risk of miscarriage with amino and if you’re keeping the baby then that’s a pointless risk. If you’ve decided then I’d be telling the hospital that you’re happy with your choice and you’d prefer not to be apologised to.

Steeley113 Wed 07-Feb-18 14:05:38

Is it 100% Down’s syndrome or just a high chance? I ask because you said you’ve not had an amnio? If you choose not to have it fully diagnosed prior to delivery, they probably don’t want to worry you with information that may not actually be relevant. Have they given you a specialist midwife yet?

BoogleMcGroogle Wed 07-Feb-18 14:06:32

I have worked with lots of families which include a child with Down Syndrome and would agree with the suggestion on here that your best next step is to get in touch with the Down Syndrome Association (who are lovely and really helpful) and try to make contact with a local group.

You've been given a really big piece of news. Take time to take it in and I think that meeting other regular families with a similar experience will help you to breath a huge sigh of relief and to look forward to your new baby.

bubbles3037 Wed 07-Feb-18 14:07:41

thank you all this advice is really helping im just really scared but knowledge is power and at the moment theres no help
i feel like im in a boat on my own

Ginkypig Wed 07-Feb-18 14:13:34

Firstly congratulations on your impending new arrival!

I don't have any real advice except to say keep calm and get in touch with some organisations (others have linked but I can't comment on any) they will be able to walk you through all the things you need to learn and explain anything that you want to know.

It is likely that there will be forums or a support group that you can access so you can talk to other parents.

bubbles3037 Wed 07-Feb-18 14:13:56

they have stated because of my age and there is more fluid around the babys spine than there should be they fast tracked bloods and clarified the levels were quite high and the babys heart has a leak that they have stated will hopefully sort it self out but there saying its a high chance and they have said your baby has down syndromme and then offered the amnio

Passmethecakeplease Wed 07-Feb-18 14:16:37

Congratulations on your pregnancy!

As others have already said, reach out to the various organisations available to you online or in your area. You may feel panicked now and like you need more info but I'm sure that by the time your little one arrives you'll feel so clued up that you'll be back on here giving advice out to someone in the same boat you're currently in.

I also think that your hospital needs to be told to stop behaving or talking in the way they are, it's not right or fair in any way.

TournesolsetLavande Wed 07-Feb-18 14:17:39

Why are you panicking?

What a ridiculous question.

fluffyrobin Wed 07-Feb-18 14:19:25

Congratulations on your pregnancy!

How wonderful.

You are having a miracle baby and I hope everything goes well.

You will come upon a lot of different opinions and the most important thing for you and your baby is that you are informed of all the facts so you can prepare.

I refused the amnio test as an older mum with the reasoning that if there was anything 'wrong' with my baby s/he will need more love not less!

Good luck and enjoy your pregnancy flowers

flobella Wed 07-Feb-18 14:20:00

I have seen this lady speak before and she is very inspirational, hope this helps and congratulations on your pregnancy.

bubbles3037 Wed 07-Feb-18 14:20:02

thank you for all the links im going to use them

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