Edwards syndrome.

[LynzyG]

Hi everyone.
My baby boy has been confirmed as having Edwards syndrome. It was first suspected after a scan at 10 weeks, our boy had full body cystic hygroma, reversed blood flow and some abdominal organs still outside his little body. Following a cvs, Edwards was confirmed. With the extent of all his little problems we have made the heartbreaking decision to terminate. My surgery is tomorrow morning. Don’t really know why I’m writing this on here really! I’m not usually the ‘talk about my feelings’ kind of person. But we are obviously devastated. Just wondering if anybody had been through anything similar?

Thinking of you.

I went through the same thing in October last year although my little girl had a different condition. I delivered her at 16 weeks and we were able to spend time with her. I am forever changed by what happened and will always consider myself to have 2 DD - it's just that I only have one here with me.

The decision is a very difficult one but for us once we knew that she would likely be stillborn or die shortly after birth it made our decision easier in some way. I didn't feel I could carry her for 9 months knowing that she wasn't going to be able to stay.

I would really recommend ARC like some previous posters already have. The community there was a source of comfort to me as I didn't know anyone irl that had been through anything similar.

It is a truly awful thing you're going through and I'm so sorry you're going through it x

I hope today went as well as it could. I went through the same thing in May, also for Edwards Syndrome. My little boy should have been born last week.

These past few months have been really difficult and sometimes I have days when I am very sad and upset but it is all part of the grieving process.

The hospital have been brilliant at providing counselling and advice, so maybe see what they can offer, even if you don't use it for a while.

I'm so sorry you are having to go through this awful time. Take care

I hope you're ok OP. I went through the same in January at 14 weeks. I went with general anesthetic as I couldn't face being awake. It was an awful time, as you sadly know. The best thing I was told is "you've taken on the pain so your baby doesn't have to".
Thankfully I got pregnant again quickly and am expecting in two weeks time. It's no more likely to happen again than it is to anyone else.

OP a close friend had a little girl with this syndrome, and she too terminated the pregnancy. You’re in my thoughts and prayers, and your little boy too. It may give you some comfort later if you keep some memento from the pregnancy so that you have a physical object you can associate with the memory of your son. and hugs

Thanks for your posts everyone. Thursday went as ok as can be I suppose? Although we weren’t told until we got there that’s it was a women’s only ward, and my husband could only drop me off and pick me up. Under the circumstances, this was understandably distressing, having to face everything alone. We decided to name him Jenson. And we’re going to get a star named after him and put the deeds in what would have been his room. Still trying to come to terms with it all. Iv been quite numb up until today. But all’s Iv dont it burst in to tears all day today! 😢

Terminating for medical reasons goes against everything our physical and emotional selves desire: bringing our beloved, precious children into the world and bringing them home.

With every cell of my body, I longed for our lost little girl.

It was a beast of a time. Brutal.
We got through it. The grief was very lonely and isolating at times. Sometimes DH and I united in our grief. Other times, we drifted apart. We healed.

You will too.
I am so incredibly sad for you. Please find the arc forum. It was my buffer. I hope it can be yours too. May the shadow of your loss soon become a light in your heart.
Jenson's light.

Sleep tight, little Jenson.

Naming a star after him is a lovely idea.

I am glad you came through it all as ok as can be expected.

Took good care of yourself individually and yourselves as a couple

What a lovely name. hugs.

Beautiful name. Rest well little guy

Thinking of you Lynzy and hoping someone is holding you tight, as you hold Jenson in your heart forever.