just had positive downs test. have u been in same position?

(15 Posts)

I ended my pregnancy due to Downs and AVSD. I was advised to do this by the doctors but what really set my decision in stone was speaking to the parents/carers of some babies/toddlers/teenagers with DS.
DS is widely varied so you cannot predict whether you will have a happy ending or not so it's a very big decision to make for your child. Some people I spoke to were very happy, others admitted that they wished they had ended their pregnancy and they would do that if they were to have another child with DS. I think the main factor was the extent of the problems.

DS isn't just about looking different and there are lots of associated health conditions. In my baby's case my baby's heart wasn't in great condition (I had further detailed scans on this before determining the DS) in case she didn't have DS. The doctors told me that many babies don't even make it to term or ever get strong enough for the surgery that they need. I personally wasn't willing to take a chance and risk watching my baby suffer and die for the sake of my own want for a baby but I can understand why some people want to take the chance. Me and my OH were both Catholic before this experience but not any more. The church refused to bless our baby, though a C of E vicar did, and that was more distressing than the termination itself (which took 5 long days though worth every moment because they eventually brought me my baby and made me a mum).

There isn't a right or wrong decision in this situation, only what you feel is right for your baby and your family. People tried to make me feel bad about my decision but it was made out of love and compassion for my baby. I will never feel bad about that.

swavesey Fri 12-Apr-13 12:01:52

Hello

You might like to read this website: http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

x

eidsvold Fri 05-Apr-13 06:25:30

I was told at 20 weeks if my baby was born without Down syndrome it would be very rare indeed. She was born with a heart defect and Down syndrome. She underwent two open heart surgeries at 8 weeks old and at 10 has not looked back health wise. She is one of three daughters that we have. She is the eldest. I can't imagine my life without her. I have seen the best and worst of people but by and large she has a great life. She is in a mix of mainstream and special school. She attends a mainstream dance school and swimming school. She is becoming a teenage girl very quickly. Makeup and clothes as well as a laptop were the top of her Christmas list last year.

While she is delayed somewhat in terms of development she is a very socially able young lady. She is less work than her two siblings. She has friends from both her mainstream school and her special school. In fact she is an upper school buddy for a prep student as are the other year 5 and 6 students at her mainstream school. She has been helping hte younger student settle into school.

I anticipate that she will be able to live with some degree of independence. In fact she strives to be independent. She is a strikingly gorgeous young lady who no doubt will also attract her fair share of male friends. To that end, I see that she will also possibly marry. I also anticipate that she will be in some form of work. She is more than capable to it.

As to her siblings - she is just A their big sister. A right pain in the arse when she wants to borrow your stuff without asking, when she walks into your bedroom without knocking, when she drives you bananas cause she wants to hang out with you. She is great at slamming doors in a hissy fit or shouting I hate you when her sisters piss her off no end. They do not see any issues with having her as their sister.

I can't deny there have been tough times but the hardest stuff we had to deal with came from others and their ignorance and lack of human compassion and decency. Those who felt my daughter should have not have been born let alone still be alive and living a life of worth. That has been the difficulty we have faced. Sure watching her at 8 weeks old to through two lots of open heart surgery was not easy but we did it.

Wile some doors may have closed - so pm any others have opened and I would not change the journey for anything.

olivertheoctopus Wed 03-Apr-13 22:53:59

No personal experience but just wanted to give you a hug and hope that you get the right advice to come to a decision which works for you and your family.

TelephoneTree Wed 03-Apr-13 22:43:06

Hello - I'm another one with a little boy with down's syndrome. He's just over 2 now and a rather wonderful addition to our family. He has 2 older siblings.
Please PM me if you would like to ask me anything.
Much love
xxx

oceanoftears Mon 01-Apr-13 16:21:25

Hi Sarah, I am really sorry to hear that you are going through this. I was in the same situation in January. It was a huge shock and the hardest decision to make. It took us three weeks to make a decision to terminate. It was an agony and still is for me. Can't help but feel guilty and no day passes by without thinking of it. I can only say that it's very personal, so best to do research properly , talk to your doctor or may be talk to mums who has baby with DS and then decide which is best for you. Hope whatever you decide to do works out for you x

BigCorrieFan Mon 01-Apr-13 11:44:02

Hi Sarah

Sorry to hear you are going through this. I had a positive CVS results for Downs on Friday 8 March and it was a huge shock and blow. I was a complete mess for days, I couldn't stop crying, couldn't eat, and felt like I was in some sort of shock.

We did decide to have a termination when I was a day short of 16 weeks. (It was an agonising decision but I think the right one for us.) This was arranged via my local NHS Fetal Medicine Unit, and took place in the Gynae ward of my local hospital. I was in for around 12 hours.

If you want to chat about anything or have any questions at all about any aspect of all this, ,no matter how difficult, do feel free to ask me, either here on your thread or via PM.

Whatever you decide to do, I hope it will all work out ok in the end. I am so sorry that you are going through this. Please do post again and we will try and help you through this.

Cheers
BCF

LittlePoot Fri 29-Mar-13 08:10:13

I'm so sorry you're frightened and upset over your result. I had the same with my first pregnancy-a 1:4 result then a positive from the cvs. Before I had the test, I always thought I'd continue a pregnancy with downs syndrome but once the result came I completely changed my mind and we terminated at 14 weeks. Its true that the outlook for some people with downs is much improved and I see children around with downs, fully integrating with their peers. But its also a syndrome with a massive spectrum of severity and linked to things like increased risk of cancer and early onset Alzheimer's. In my case, I didn't want to carry on and so that's the decision we made. No regrets at all and I went on to have a now 2 year old with no chromosomal issues. You'll find many examples of both decisions around here and the special needs board so I'd advise you do some research and thinking then make whichever decision feels most right for you. Neither will feel completely right just now because you're upset to be told your baby has a "condition" but of course no one wants to make a decision to terminate a wanted pregnancy. But whichever way you decide will be right for you and there will be people here to support you. x

WipsGlitter Thu 28-Mar-13 22:06:03

Hello! Asrealnappies said I have a child with downs. We didn't know until he was born and it was a hard time. But now, he is the light of my life. Everyone loves him - what an amazing thing to be able to say! Yes we have worries about his future, but one day at a time. I think the view of a child with downs being a burden is very outdated as society wants to be more inclusive and there is more help and support there. Hopefully my son will start mainstream nursery in September.

Please PM me if you would like to talk.

Gatorade Thu 28-Mar-13 15:42:54

Hi Crafty, I'm sorry you are feeling so frightened now.

My baby was diagnosed with Downs Syndrome in my first pregnancy, we decided to continue with the pregnancy (despite what I honest felt was a bit of pressure from the medical professionals to terminate). Once we had decided to continue the support we received from the hospital staff and support groups was amazing. Sadly our little boy died naturally before he got to term from a linked heart condition, it was a terribly hard time but I feel we did the best we could for him.

You have to make the decision based on what is best for you and your family, there is amazing support available no matter what you chose to do.

Good luck

Bakingnovice Thu 28-Mar-13 15:37:40

Hello, I didn't want to read and run. Havent been through this myself but wanted to let you know I'm here to hand hold if you need it. How are you feeling today? Is there anyone in RL you have discussed it with.

Walnutwhips Thu 28-Mar-13 15:32:40

I have been in exactly your position, I chose to end the pg. DH has a cousin with DS and we have seen how hard it is for his parents. We also decided that we did not want our other dc to feel obliged to provide care if needed after we have died.

It was the right decision for our family.

I suggest you contact ante natal results and choices for impartial advice whether you decide to carry on with your pg or not.

www.arc-uk.org/

realnappiesmum Thu 28-Mar-13 06:45:59

Hi Crafty,don't know what your thoughts are about what you want to do with result. I had positive result for down's syndrome at 21 weeks. We continued with pregnancy and our beautiful daughter is now 6months old. She is an absolute delight and fantastic. She melts the hearts of everyone she meets with her beautiful smile. If you have been on Google about downs just be aware that a lot of stuff on internet is out dated. Things have improved dramatically over the years for children and adults with downs syndrome. Many children attend mainstream schools and many adults work and life semi to independent lives. There is a section on the Downs Syndrome Association website about diagnosis during pregnancy and also a very good website and linked Facebook group called future of downs. Should be able to provide you with up to date information on downs Syndrome. Wipsglitter on here has a child with downs Syndrome and she is very informative. As i said i don't know what your thoughts are but wanted to let you know it is not all doom and gloom.

mytwopennies Thu 28-Mar-13 00:09:26

So sorry to hear, afraid I'm no help as yet but am awaiting my cvs tmrw. Just wanted to give u a hug, hope someone will be along shortly to offer some real help X

craftysarahp Wed 27-Mar-13 23:46:19

hi
had cvs last friday, scan fine blood 1:14 call late today positive for downs syndrome
so numb cant sleep frightened can you advise if u in same situation?
thanks

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