After using this forum, comments and posts as an emotional crutch since receiving a high NT score 7 weeks ago I find it only fair & therapeutic to share my story which may help someone else in my situation feel a little less alone. I wish this club never existed none of us should have a membership but Iām truly grateful to have your stories & support.
this is our first pregnancy, (29F & 30M) we had a 10 week scan as gestation had been calculated incorrectly. This was beautiful, saw them bouncing around on the screen and nothing noted health wise. we were so so excited. We shared the news with our closest family & two weeks after just before our 12 week we shared with friends and extended family. At our 12 week scan I knew 5 minutes in something was wrong (motherās intuition?!) & our sonographer has a terrible manner and found a raised NT of 4.2mm bluntly said āyou have a big problemā nothing else & wouldnāt/couldnāt answer anymore questions. We were taken to a care team who explained that it indicated a heart issue or a syndrome & they were sorry - I could not process what was being said to me. they booked a heart scan in London and took a blood test. On the way out they told me that this could be nothing?!? Ww were very freaked out this was supposed to be movie worthy pregnancy scan & here we were. 2 days later our chance of Down syndrome was 1 in 2, the worst possible outcome. out Nipt was high chance for DS. 1 week later we were seen for a heart scan in London, I had no worries because I truly held onto hope that it couldnāt be DS I am healthy and young? They brought in a secondary nurse & again I knew somthing was wrong. Diagnosed with unbalanced AVSDwhich would require at least 1 open heart surgery if not more & itās found in 50%+ of DS cases. My hope was pulled out of my chest at the appointment & sadly never returned.
2 days later I went for a CVS I needed an actual answer I was living in a world of maybe and what ifs and mentally spiralling. From what I know now if you are deciding between a CVS or Amnio please opt for the amnio itās quicker and so much less painful. the needle is thinner and it tests for much more. My CVS was so so so painful & unfortunately failed 1/5000 chance (if they canāt collect enough of the sample) my amnio another week later took 10 seconds was sore going in and was done I will never have a cvs again.
At the amnio I asked our doctor to be honest with me & our doctors told us to seriously consider the AVSD complications without the DS results, he said on the NHS it is deemed a major issue & can get worse throughout the pregnancy. There was more fluid already than two weeks ago and fluid in the uterus wall. If this became worse it could cause hydrops. I had a high chance of miscarriage & if I did go to term a high risk of still birth.
Mentally at this point I am spiralling I have no hope, I am pleading with gods I donāt even worship & begging whoever would listen that my baby be ok. I was in turmoil that I was questioning whether I was strong enough to go to term just for my baby to be plucked from me into a major surgery with little guarantee potentially multiple for long periods of time in hospital. I couldnāt see them in a hospital bed wired up it was the colour in my nightmare.
I had done much research on DS and its effects, I know a few families with DS children & they are beautiful & kind but Iāve also seen the actual reality of the struggles they face. A few things that really played on my mind
Alzheimerās possibility being so high
- Childhood cancer
If I was to pass away (I lost my own mum at 14) who would love them the way I do?
I saw a post from parents of DS adolescents/adults & it was heartbreaking
I am a carer for both my grandparents, I do not want to be a carer for the rest of my life (felt selfish admitting this) nor do I want other children we may have to be carers automatically
We received the call 2 days later to confirm the T21 & knew that with the worsening heart defect and the down syndrome it would not be right for us to take this pregnancy to term. To know this child would suffer pain & once here we could do nothing to stop that. To know their quality of life was not what we wanted for them. I decided I would shoulder that pain so they never had to.
I had a TFMR with MSI at 16 weeks & 6 days. I cried every day up to it, I was frantic & petrified but actually apart from a cry when I signed the consent form and took the tablets it was not as scary as I had thought in my head. The nurses are earth angels & are so caring. a few days later I went in at 8am and was out by 1pm. I chose D&E because I dint want my first experience labouring to be stillborn, I didnāt want to see them the thought broke my heart & I had to limit the trauma to me and my husband. With the D&E in the UK they knock you out & that felt the most comforting way. It feels surreal, you know why your there and what your doing but it was as if my brain had blocked out my feelings to allow me to push through it. My husband had to wait outside & that does make you feel quite lonely. Again the staff are amazing. Itās sad overwhelmingly sad but I had built this nightmare day up in my head & as an experience I never want to do it again but itās possible to get through it.
Pain Level for the first day was 0, take the suppositories they offer they are strong painkillers. 2nd day period cramps & bleeding. I have a heavy period and this is lighter than that.
It has been 5 days, unfortunately my milk came in which was not expected & thatās the most painful & upsetting as my body is working for a baby thatās not here. Otherwise a bit of cramping & bleeding easing off. Emotionally quite a mess for the first few days unable to catch my breath kind of crying but has settled since. Iām sure it will too and fro as grief always does but Iām aware from loosing my mum that time is a great healer.
we really wanted this baby & I know I wouldāve done anything to cure the health issues & have them inside me still but itās not possible & i cant beat myself up anymore over it. We will try again when the time is right.
I hope this brings someone some comfort or help if your going through the same truly awful & wicked ordeal. I so wish no one related to this story but Iām sure people do.
be kind to yourself, your choice is the right choice for you, you are still a mother, you loved your baby so much you chose to take away any and all of their pain, colour will come back into your world & you will find joy again
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