Active discussions

Are your children’s vaccines up to date?

Set a reminder

Please or to access all these features

Talk
Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

Just had amnio result - would welcome some support

152 replies

dreamingoflamu · 02/10/2006 13:38

hello all
Sorry to bring a sad thread to the pregnancy board. Last week at our 20 wk scan our lives changed completely when we were told our babe had a serious heart condition (AVSD), we then saw specialists who confirmed this and found several soft markers for downs also.
Had an amnio last Tuesday and after the most hideous wait I have just been told that I am carrying a downs baby. I feel calmly numb at the moment - but there have been lots of tears over the last few days. We have a huge decision ahead of us, one I wish I could make go away.
I've done lots of reading, contacted support groups and have read archived MN threads which have really helped. But I could really do with some words of support, I'm so scared no matter which route we take.
we have a 17 month old ds who is keeping us sane and even smiling, but would really welcome some wise mn words
thanks

OP posts:
Are your children’s vaccines up to date?
Set a reminder
ThomBat · 06/10/2006 18:14

What a great post wannabe, gave me goosebumps everywhere, in fact still have them down my arms as I type.

Just checking in on you Dreaming, wondered how you are today?
TC xx

TutterIckOrTreat · 06/10/2006 20:54

have been following thread and just wanted to post to wish you strength for whatever your decision may be. i hope it's the right one for you and your family. x

saggarmakersbottomknocker · 07/10/2006 10:48

Dreaming - still thinking of you.

Wannabe - brill post. My dNephew has no sight and like you is very independant.

Great photos

Original poster
dreamingoflamu · 07/10/2006 14:51

hello, still here and still not come to a conclusion. It feels like this has been going on forever, which I think is harder for me than my dp because I am carrying this child and my emotions are all over the place not knowing whether to bond or to hold myself back to save future hurt. The last few days have been up and down for both of us, and we've been trying to order our thoughts after absorbing so much information. We seem to now be at the stage of trying to figure out if we could make this situation work. Not because of the disability so much, but more because the way our lives are set up at present would make it nearly impossible to create the best environment for this child. I'm not going to go into details - but alot would need to change.

Wannabe, thank you so much for sharing your story, both my dp and I have been amazed by some of the posts, how honest people have been and how non-judgemental.

Thankyou all xx

OP posts:
Katy44 · 07/10/2006 16:41

Just wanted to say hello. I can't imagine what you're going through, with such a huge decision to make, but I know that the decision you make will be the right one.
Hope you are looking after yourself xx

mumandlovingit · 07/10/2006 18:05

i hope that you come to a decision that you're both happy with and the best in the situation that your family are in.(whatever that may be)

i have a friend with a child with ds amongst other disabilities.he's a gorgeous child but im not going to deny that he is very hard work and he cant talk yet and he's 7.i think thats due to other problems than the ds though.

he talks with a type of sign language and he's so loved by everyone he meets.the parents do get some ignorant people commenting but they rise above it.they've got a gorgeous child who gives back as much love as he gets.

i really dont know what i would do in your situation, especially with your other child so little still.that decision is purely yours.

there are some heart wrenching stories here which show the true facts of having a child with ds.
make sure you are true to yourself and your dh and family and make the decision that is right for you.no-one will judge you either way.

i really wish you all the best whatever you decide.

geekgrrl · 07/10/2006 19:21

hi dreamingo, sorry to hear you're still feeling torn.

thinking of you.

flack · 07/10/2006 19:55

I think you might find this thread helpful , dreaming. You might come to a completely differnet conclusion, but it's someone on MN who had to wrestle with the very same decision.

ThomBat · 07/10/2006 20:08

Dreaming, sorry you're still in such turmoil.

What is it about your lives that worries you with regard to this baby? Do you want to talk more about that? Nothing in our lives has changed with regard to having a child who has special needs, ther than it becoming a better place. Kids always change your life a bit and having 2 changes things again but I wouldn't say that we had to make a chane or do anything different just becasue Lottie has Down's.

Original poster
dreamingoflamu · 07/10/2006 20:40

Thombat - just tried to CAT you.

OP posts:
ThomBat · 07/10/2006 20:42

This reply has been deleted

Message withdrawn

Original poster
dreamingoflamu · 07/10/2006 21:12

Hi thombat - did my email get to you?

OP posts:
ThomBat · 07/10/2006 22:34

Hasn't come through.

Dp freaking at me so will have to get that post deleted with address in it.

Original poster
dreamingoflamu · 07/10/2006 22:55

will try again now. your dp is probably right!

OP posts:
Original poster
dreamingoflamu · 07/10/2006 22:58

just sent another through, if it doesn't work try to CAT me with contact details maybe?

OP posts:
ThomBat · 07/10/2006 23:04

I CATed you but just after I got your 2nd email and have replied.

ThomBat · 07/10/2006 23:19

I'm off to bed in a mo, busy day today visiting new babies etc etc and out for the whole day tomorrow so need to get under that duvet, will be back Sun eve.

nojopo · 07/10/2006 23:31

my favourite aunty was ds. having a close view of how ds affects a family in a positive and negative way i did think alot when pregnant about what i would do if i was faced with your situation. and even knowing the good side of things didn't know whether i'd want to.
times and attitudes have changed so much since she was born (she died in her 30s about 20 years ago) reading this thread and the huge positivity from ds mums has made me rethink things.
it was damn hard work for my grandparents regardless - i don't think my grandma ever had an uninterrupted nights sleep again. but my aunty was very cool and very much the focal point of our family.
my thoughts are with you ,keep up the chocolate intake x

fussymummy · 08/10/2006 00:29

HI, Have just come across this thread.

To be faced with having to make a choice during pregnancy is so very hard.

Obviously, you are doing lots of research into Downs before you make your decision.

I won't say i'm sorry for you, as we have two very good friends with a 5 year old son who has Downs.

When he comes to our house and plays with our 3 children, i don't look at him and think, he has Downs.

I look and i see a lively, energetic, happy, loveable little boy, who's into everything!!!

He may be a bit 'different', but we're all different, in one way or another.

Yes, he's had his fair share of heart operations and thankfully, came through each one.

My kids don't see him as being different, he's just a happy, funny little boy, who plays and joins in all their games.

He's in a mainstream school and has lots of friends.

When i was pregnant, i was offered the tests for Downs, and i refused each time.

My midwife told me i was mad, as my life would be very different if i had a Downs baby.

I could not throw a baby away, that could lead as normal a life as most other children.

Obviously, all our children were part of us, and i couldn't ever throw that away, hence, why i refused the tests.

Someone i knew said, how could she hold down her career if she were to ever have a Downs baby.

All she ever wanted, was perfect.

I said to her one day, what would you do, if your 'perfect' baby caught (e.g) meningitus?, and lost limbs because of it?

How would you react to that??

The baby would no longer be 'perfect' and would need extra care.

She had no answer!!!!!

Sorry for going on, but i wish you well, in whatever you decide. xx

flack · 08/10/2006 11:22

Dreaming, I think you'll end up feeling some guilt and doubts no matter what you decide. Maybe you have to go with the decision that is most bearable today, and no one should blame you for that however it all turns out in the distant future. A child with Down's may be heartbreaking and difficult to adjust to for you, but any child can be like that, anyway, even if they are otherwise "normal" in every measurable way.

I know if it were me I would choose to terminate (though it would be awful). That is based on first-hand experience and observation and listening to stories from people who have children with Down's. But that's only me. You're the one who has to live with your decision that only you can make.

geekgrrl · 08/10/2006 11:34

dreaming, if you want to chat, CAT me. I'm around today and would be happy to talk.

mumandlovingit · 08/10/2006 22:57

flack

i admire you for being so honest about you would terminate, few people are now.its such a taboo subject and causes so many debates.

good luck to dreamingoflamu whatever you decide

there are reasons and situations for abortions and its up to each individual to decide whether its right for them

nobody should judge anyone for whatever decision they decide regarding a special needs pregnancy or any other pregnancy

Blu · 13/10/2006 18:37

Dreamingoflamu - I was thinking about you and wondering how you are...whatever it is you have decided.

Maybe you won't come back to this thread, but if you read this, know that people are thinking of you.

XXXXX

Original poster
dreamingoflamu · 14/10/2006 13:22

hello, just an update. We are still here and still deciding! I would never have imagined that it would take this long to come to a decision. But this is something we can't rush, and we are sure we will know it when we come to it. I've calmed down a bit on information gathering and we are now focusing on our own circumstances and the impact of each choice. Its also taken time for dp and I to come to the same point in understanding the enormity of the situation and to get through some of the painful emotions so we can think rationally. But we feel very close at the moment.

Since I last posted we have seen a paediatrician in the neonatal unit of our hospital - he was fantastic and gave us lots of detailed information on the heart condition as well as downs particularly what this might mean in reality in the first few months and years. It made it much more real for us than the abstract information we got from other docs so far. Also I have to say we haven't felt anyone we've come across has had a negative view of Downs.
And we have been for counselling at ARC which was very reassuring - to know our reactions are completely normal and that we will come to a decision eventually. If anyone else is in a similar situation I would recommend getting as much specialist advice as possible - and pushing for it if its not offered.

Thank you for all your thoughts, I will come back to this thread once we have made our decision. I know how useful mumsnet was to me when this was all new - so hopefully this thread might help someone in the future.

dreaming xx

OP posts:
PeachyBobbingParty · 14/10/2006 13:30

Just wanted to send my love and support, and hope that you are able to reach the right decision for your family shortly. I am glad you haven't met any nay sayers (we did when they though DS3 had Downs, he didn't but we didn't have amnio). Take care

X

Swipe left for the next trending thread