16 Weeks Pregnant - DS Diagnosis

[hunnybun]

As a mum of a child with a disability I can tell you this...

It's ok to grieve for what you thought your child may have been...
It's ok to feel afraid for what the future holds...
It's ok to worry about whether you are up to the task...

But...
I can also tell you that you will love and protect this little one just as much as your son and the love you get may not always be expressed in a conventional way but is in every smile, every look, every action.
I can tell you that it will be hard, tiring and exhausting and overwhelming at times, but you can do it because this baby is yours. You might even have to fight for what you believe to be right for them, as you would I am sure for your older son.
I can tell you that you might wonder sometimes about what might have been, but you will never want them to be gone or different, for then they wouldn't be the child you love right now, in that moment.

I think you have made a really good choice in giving you and your family the time needed to adjust, learn and prepare for the adaptations that lay ahead. How kind of other posters to offer hands of support... take them when you feel ready. Most of all, remember that this is just a part of what defines your baby; who knows what they will be capable of in the future?

Finally, I can tell you that many cardiac anomalies can be picked up antenatally and there are certain conditions which are particularly associated with Trisomy 21, as well as a few gut anomalies, which cannot be picked up in utero unfortunately. Your obstetrician will be looking out for them, and they will talk you through every step if they find anything.

Take care and a big hug to you and your partner x

[storm]

DD has a peer with Down's Syndrome, they have gone through mainstream school together, she's gone on the school residential week with the support of her peers.They attend the same dance school. taking part in the annual exams/show. They have now left school and her friend has a job.
Down's Syndrome has a large support group , google for your local one, pay them a visit they will be invaluable.

[christybell]

Oh Emma, no advice to offer just wanted to say thinking of you, Scott and Mason. Your wonderful attitude will see you through.

[Guest]

No experience of DS but just wanted to say that no matter what problems you encounter with the symptoms that people with DS often have you'll learn to live with each one. Lots of children and adults have health issues which cause problems for them but they all have to come to terms with them and learn to overcome the problems they present. You will do the same and it will just become part of your life

I also think DS children are only sent to very special people

[djewkes]

I think a DS child is a special gift, sent only to special parents... and I am absolutely certain you will be fantastic.
Things have changed dramatically for people with DS over the years and they now look forward to long, productive and fruitful lives. Coming to terms with it will take you a while but you will... take every bit of support offered... and enjoy your baby...sending every good wish for you and hopes for good health for your baby... xxx

[JudyC]

Sometimes life has a way of taking an unexpected turn that you never imagined. After the initial shock and grief you do learn to cope, and then eventually you can't imagine life being any different. When it's our children who are affected that's so hard, we just want to protect them and their happiness more than anything.

[Nic1982]

I don't have any experience with DS but at my 20 week scan I was given devastating news about my baby and offered a termination so know some of what you are going through. My husband and I decided to carry on with the pregnancy and my son was born in March with a lifelong illness. He has spent a lot of time in hospital and he finally came home last week.

I totally agree with the person on here that said a baby with an illness is a special gift and is only given to a family who are able to cope, so you must be a special kind of family.

We made sure we did our research regarding his illness and made it our business to speak to as many specialists as we could. You do mostly have to do this yourself as information is not readily given to you.

We have other children and they don't see Ethan's illness, they just see past it and see him as their little brother. His time in hospital was hard on them (and us trying to balance time between them) but they adapted pretty quickly, as children tend to do.

As previously said, don't feel bad to 'grieve' for the healthy baby you thought you were expecting. It has been hard to get past that and I do still have sad moments when I wish he didn't have to go through what he does but I 100% know we made the right decision to give him a chance in life and he is so worth it!

Good luck with the rest of your remaining pregnancy and feel free to ask if you have any questions xx

[LunaNyteskye]

Congratulations xx

My cousin has DS and is also autistic. He also has some health issues on top of the DS. Things were more challenging for him, and for my aunt and uncle when he was growing up. They have had to fight every step of the way to get him everything he needed, but they wouldn't change a thing. He's 23 now. He went to mainstream school, with support. He didn't enjoy college so got a job at the local recycling place which he loves. Last year moved into his own flat in supported accommodation which he shares with another DS boy and he is thriving. He loves music and tattoos (he has quite a few of them now). He's a funny, quick witted and independent young man.

[orlando10]

Hi
Firstly congratulations, I don't have experience directly with DS but do have a child with a disability, my little girl suffered a stroke in the womb in my last weeks of pregnancy and has right sided hemiplegia cerebral palsy and this wasn't diagnosed until she was 5 months old and I can totally relate to the other posters who said it's ok to grieve for the child you thought would be, its ok to be frightened of the unknown and of course how life will be, a friend forwarded this passage to me and I found it helpful,

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



My little girl is six now and after us being told they didn't know if she would walk, talk etc she is just like any other six year old albeit with a few wee difficulties and epilepsy. I'm sure with such lovely parents and a big brother your little one will bring much joy.
Best wishes x

[Bellesdream]

The 'welcome to Holland' poem is definitely a good one. I know a close friend of mine who's DC does have DS finds this poem perfect for trying to explain to people how she feels. I know their diagnosis was after DC was born and it took time to adjust and work it all out. But they as a family are amazing they have worked it out - no it's not always perfect or easy but they have done it and so will you x
Congratulations on your pregnancy, ask your midwife and consultants for information, join support groups-start going to coffee mornings etc build a support network ready for a newborn 😆😆😆