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We have just been told our unborn baby has Down's.

(109 Posts)

Im not sure what to do next...

Oh Saggy, I saw your other thread. It must be a shock for you flowers

Pagwatch Mon 23-Sep-13 20:08:38

Hey Saggy,
Nothing quite prepares one for such a thing.
I am so sorry - you must have a million things going on in your head right now.

I don't have a child with Downs syndrome but I know mners do. I hope thy can help you articulate your questions.

Much love to you x

WipsGlitter Mon 23-Sep-13 20:15:32

Hello Saggy. I think I was on your other thread. Deep, deep breaths. It's NOT the end of the world. It's a different journey but its still a good one. I love my boy with Downs more than I could have ever imagined, in fact I was just thinking earlier about how going to get him out of his cot in the morning is one of the highlights of my day.

One step at a time.

Please, please PM me if you want to talk / ask anything.

Ive had aa couple of weeks to think things through while we waited for CVS and results. Ive done a shit load of googling and scared myself half to death. Ive had hysterics and now Im calm. DP looks stunned. Having looked at the other things that CVS could have found, Downs isn't so bad.

Thanks Wips Your support has been very much appreciated.

LegoAcupuncture Mon 23-Sep-13 20:17:59

Oh Saggy, what a shock for you flowers

There are a few MNers with a child with DS and hopefully they will be along soon and can give you some helpful advice.

When are you next seeing your MW? I'm sure she will be able to give you some advice and point you in the right direction.

Midwife is next Monday. UCHL are calling back in the morning to arrange a heart scan.

SPBisResisting Mon 23-Sep-13 20:26:18

Saggy I know nothing about these things but hope the heart scan comes up clear. X

LegoAcupuncture Mon 23-Sep-13 20:31:55

I do hope the heart scan goes well.

When you're ready list of local support groups. I found the information from other parents/carers much more helpful than that of professionals.

PolterGoose Argentina Mon 23-Sep-13 21:26:56

Hi Saggy best wishes for the heart scan flowers I'm sure the SN boards were not where you expected to be, but welcome, there is a wealth of experience here, always someone around and whilst we won't always know 'the answer' or share your experience, there is always someone to share virtual wine and brew and cake

Polter I didn't expect to be here, but Ive discovered some amazingly supportive areas of MN in the last year. I am sure SN will be just the same.

bigbluebus Tue 24-Sep-13 11:29:40

Saggy when I read threads like yours, it makes me so glad that we didn't know about DDs Chromosome disorder before she was born. (she doesn't have Downs - something much rarer)

I can't imagine what it must be like to go through the pregnancy knowing that your baby has a diagnosis - but I'm sure there are lots of MNetters on here who do know.

I have read your other thread and know that you are determined to keep the baby. I hope the heart scan gives good news.

My nephew (now 18) has Downs and is doing very well. He passed 5 GCSE's and is now in his 3rd year at a SN residential college and is hoping to get a qualification in horticulture and hold down a job - which he is capable of doing in the right setting. I know that Downs can be a very variable condition, so not all children achieve what my nephew has, but I know many who have.

Life will be very different from what it was like bringing up your other children. But bringing up any child can be difficult - you just have different battles to fight with a child with SN. But we have met some wonderful parents and professionals whom we would never have met if it wasn't for DD's condition.

I wish you all the love and luck in the world for your future and that of your new baby when he/she arrives. Keep posting for support. I look forward to following your journey.

Galena Tue 24-Sep-13 11:38:53

Saggy I hope the heart scan goes well.

Due to DD's prematurity and cerebral palsy we were involved at a special needs baby group. There were a couple of children with DS. One is now full time in a mainstream Y1 class, and pretty much keeping up academically with his peers. The other does part time at MS nursery and part time at the special school with a view to moving to full time MS primary in September next year.

As with any diagnosis, it's a shock, but there is lots of support here for you xx

saggy just found this today. My son has DS you will find his photo in the This is my Child campaign gallery. He is the liitle boy with a menu. Please PM me if you have any specific queries that you can think of.
There are also national contacts for a DS support heart group/information service, if you find that you are going to need them.

It is a shock and not part of your plan for yourself but please know from those who are a little further through their journeys than you, your child will bring huge joy. There will be tough times but I've also never known such joy from living with our boy. He just fitted into family life straight away and is adored by his siblings too.

Be kind to yourself, don't google too much, take in the shock and you'll be readier to meet your baby. And it is still your gorgeous baby!!

Even some medical professionals have outmoded ideas about DS. I know several children who've had heart surgery and gone on to thrive.

Check out the DSAssociation and the websites and fb sites they recommend.

Please send a message if I can help more. I'm in Manchester if any use to you xx.

Me again, do let me know if you're a reader! I can recommend many good books for you to read, not medical aspect ones, you will get that elsewhere if and when you need it. But I've read some uplifting, honest, thought provoking and comforting writing from mothers of children with DS and you could glimpse some of the good times ahead xx

I had a high risk pregnancy, no confirmation until after birth but the DS warnings got on my nerves a bit, I wanted to make the HCPs understand that this was a baby which we wanted and would love...and yes we've got drawn into a world where some things take longer for our children to learn but your baby is a loved baby who happens to have a Syndrome and you know, it isn't the worst that could happen.

I've never been loved as much as my son loves me...honestly there are difficult times ahead, but such joy too. You'll find support from other parents and you'll be okay, really you will...

Sorry, last post for today but this is really important; Down's Syndrome is a wide spectrum...what you see in the typical population, you will see in DS, all sorts of different children! Yes, some things our children have in common...but our children are much more like their families than just other children who we've seen who have DS. I'm guessing your husband has old fashioned and negative images in his head. See if you can find some of the gorgeously, ordinary children around who happen to have DS. Admittedly we didn't used to know of many of them but these children of this generation are catered for better than ever. Your child is your child first with the DS just being part of them.

Good luck for scans x

God you lovely people keep making me cry! confused smile Thank you for taking the time to post.
Perspective Ill gladly take any recommendations, books or otherwise. I have the heart scan booked for Tuesday next week, so another trip to jolly old London!
I spoke to the screening MW at my local hospital today. She says that one of her colleagues is trained in counselling. She will happily arrange for DP or I to speak to her when we feel we are ready. I really think that DP would benefit from some private time with her.
Me? I have you lot! smile

Perspective your son is gorgeous. smile

Hello, and welcome to Holland, I know you've read it.
Good luck in your journey, you'll find lots of support here. flowers

Trigglesx Tue 24-Sep-13 20:41:42

Saggy welcome to the SN boards. I don't have any experience with DS, but there are some on these boards that do and are quite happy to be supportive and helpful. It's a good group of people here.

Hope the heart scan goes well on Tuesday.

I found with DS1, that H really struggled with his diagnosis (now accepts diagnosis, but still struggles in dealing with it all), whereas I just had to accept and move on to paperwork and appointments and more practical things. A number of mums here have mentioned this. I say this only because it really frustrated me at first that H was finding it so hard to move past the diagnosis where I was knee deep in the practical end of things. I think we would have benefited from counselling on it, so I think you are correct in that.

saggy, I'll get working on your book list...I can provide details of heart group if you need that later.

Try not to worry too much, I can hold your hand all the way thanks

I will tell my son tomorrow, thanks smile

I appreciate you all so much! <<weeps>>

SPBisResisting Tue 24-Sep-13 20:56:35

Saggy I hope i'm not being nosey but how old are your other DC(s)?

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