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heartbroken

30 replies

lbmum · 13/09/2012 13:50

I am 15 weeks pregnant with our third child, much wanted and much loved. While I was on holiday at the end of August we received the dreaded phone call saying that we were high risk (1 in 17) for DS. I was devestated and cried for a whole week until we went for the CVS. At this point we knew we would continue with the pg and guessed we would rather be prepared than not.
The CVS went well. The scan I had lasted one and a half hours and the doctors were confident that all was well. Our baby has a nose bone, femur length normal, heart normal, nuchal measurement 1.9mm. However, a week ago we received the devestating phone call that no parent wants to receive, our baby has tested positive for DS. Our consultant has told us that our baby is in a 2% minority where they look fine on the scan, most are picked up by a scan. It was my bloods that raised the alarm.
It wasn't until our world came crashing down around us after receiving the news that we started to consider terminating this pregnancy. I am now, a week on, almost at that point but we still have sudden moments on whether we could make a go of this. We always knew that a third would put a strain on our emotions, finances, state of minds etc but now we are faced with even more difficulties than we thought we would 'get by' on. How stupid we were to assume that all would be well. We told our chilren after the scan (6 and 4) and their reactions were precious, they were in love with their sibling from that moment on! We have now told them that our baby is not well and our DS of 6 prays every day that it will get better and be born. It is heartbreaking. We know from all the research that children with Down's are beautiful, much loved individuals but we worry beyond that, when they are adults and the fact that our children will become carers or at least have Power of Attorney issues to deal with.
We are now almost at the point of going for termination. This is not an easy option. I feel sick at the thought of killing our child, that we will need to tell our children it died when we killed it. I feel guilty that so many people would be appalled at what we might do, after all with a ds diagnosis it does have a chance of life, not like Edward's or Patau's. I have found myself in my grief almost wishing the decision would be taken out of our hands, terrible thoughts. To make it worse we are Christians and we do believe that God has blessed us with this little life for a reason and yet we are going against his will in terminating. Our Christian friends will never look at us the same again but I say this and mean this.....NOBODY can understand what this is like until they experience it. The worst grief, sadness, despair you can ever imagine. We are grieving for the loss of what we thought we were going to have and how much different it all is now. We will not be having a termination and taking the decision lightly, we have cried non-stop for 7 days and I don't know how I will ever feel happy again. We still have moments where we think what it would be like to go ahead, hold our newborn in our arms, give our children the sibling they are so desperate for, we know though that is just a short term vision and that long-term it will be so much harder. Good times too, but heartbreak, fear for the future.
Is there anyone is my position? I feel so alone, nobody posts about this much online in fear of being judged or abused by pro-lifers who have never been in this position. Please do not judge me, my heart is breaking.

OP posts:
devientenigma · 15/09/2012 10:22

as another parent of a child with DS 11 year down the road. Also found out after birth, after the heart condition and after a low risk blood test, I feel you have such a difficult decision to make. Where for me the choice was eliminated and thrown in the deep end. All I can add is you don't know which way the road will turn until your travelling along that road. It's all good taking in peoples personal experiences but please look at the syndrome as a whole, co morbid issues, medical issues and the syndrome itself from high functioning to severe. I too like to to say how it is but the more positive experiences don't like it. I would not change my son for the world and the love I feel for him is immense but I would not wish my life on my worst enemy. Ok we are in a minority but would I of known that whilst pregnant. You have a horrible choice to make and you will always wonder what if etc but please weigh up everything and make the right choice for you and your family. Thats all who matter, others are not living your life and won't walk in your shoes so easy for them to decide. Good luck with this and if you need to chat or ask more please do. (((hugs)))

lotsofcheese · 16/09/2012 08:07

Lbmum: just wanted to say that you are in my thoughts & I hope you can find peace of mind, whatever choice you do (or don't make).

Wish I had something more constructive to say but I have no experience of DS. I have a couple of friends who have adult siblings with DS & a little idea of the challenges they face. I can't imagine how difficult this is for you. Take care of yourself

feelingdizzy · 16/09/2012 08:26

This is such a sad time for you ,and such an emotive topic that I always fear making things worse.

I have a brother with ds he is the youngest of the 6 of us I have 4 other brothers ,and hand on heart I can say he is my kindest most generous brother who is always there for meHe came round yesterday with a bottle of wine and flowers for me and helped me decorate my dds room.He is als a fantastic son to my parents.
Its the not knowing how things will turn out that must be the hardest part of the decision but as others have said there are no guarantees with any off our children.

One of my brothers was diagnosed in his teens with schizoprenia(20 years ago) has battled alcoholism and drug addiction and has stretched my parents to breaking point,and as my Mum said to me recently this has been the great sadness of her life.

I'm not in any way judging you ,just to let you know my expereince as a sibling. Hoping you find some peace my thoughts are with you

PeshwariNaan · 17/09/2012 14:23

Hi Lbmum, I have not had to make this decision but I'm sure it's horrible going through it. When I was trying to calm myself before the 12-week scan I did a lot of research and came across this blog.

Kelle Hampton

It's written by a mum who gave birth to a DS daughter - even though she'd been told she was low risk. It might help you think through this as she keeps the blog current with pictures and stories about her DD. She also has one other DD, so maybe you can think through how siblings would react.

This is her daughter's birth story:

Nella Cordelia - A Birth Story

Good luck to you, whatever you choose. xx

lotsofcheese · 18/09/2012 17:20

lbmum how are you? Been thinking about you & hoping you are holding together ok, despite the circumstances

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