Edwards Syndrome Diagnosis

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We are devastated to find out today hat our baby has Edwards Syndrome. Our 12 week scan detected a high amount of fluid on baby and also had an exomphlos on its stomach.

Further testing at the fetal medicine unit at Bristol has meant that it has 100% been diagnosed as Edwards syndrome. We are completely heartbroken as while I expected the result it’s still not any easier to hear it. I am somewhat slightly relieved in a way as the waiting on the result was torture.

We are booked into to have a surgical termination next Monday and will speak to the consultant beforehand. I just wondered if anyone else had experienced this and gone on to have another successful pregnancy?

I've not experienced this op but I couldn't read and run. I am so sorry about your news. My thoughts are with you x

I had a pregnancy with Patau’s so similar and went on to have surgical termination at 13 weeks.

It was heartbreaking but definitely the right decision for us. The staff at the clinic were absolutely amazing. I’ll never forget their warmth and kindness.

Went ok to conceive my wonderful DD just a few months later despite thinking I didn’t know when I might be ready to try again after the termination.

I’m so sorry you’re going through this.

Sending you lots of love and strength OP x

I had a diagnosis of Edward's at 12 weeks last year, I had a TFMR at 14 weeks. I had a surgical termination too, which was definitely the best option for me - literally going to sleep and waking up and it was all over. Very painless, and hardly any bleeding afterwards.

I got pregnant six months later (due in a few months). Everything seems to be going well with this pregnancy, I've had my 20 week scan and no problems detected. Edward's is a bit of a random genetic issue - you shouldn't be particularly at high risk of the same (or any other) diagnosis with subsequent pregnancies. Although I was at higher risk anyway due to age, but statistically it's still a very rare diagnosis.

Thank you for all your responses.

@stille thank you for your response and so sorry to hear you went through the same thing. Very happy to hear of your recent pregnancy. We’re lucky to have our DD who is 3 but we would like to try again when the time is right. Like you, I might be higher risk due to my age but hopefully this is a one off xx

Yes I did. I'm so sorry for what you are going through, I remember the hellish waiting and the numbness I felt in diagnosis and the heartbreak that followed. My baby was diagnosed at 13 weeks and I had a medical termination a week later.

A few months later when I felt physically recovered I conceived again and had a healthy little boy who is now 4.

I would strongly recommend some bereavement counselling. Your hospital should be able to put you in touch with a specialist bereavement midwife if you request it. I was under Gloucester hospital and it's definitely a service they provide.

Depending on your actual location (you mention Bristol), there is a fabulous charity called Footsteps Counselling and Care in Gloucester who specialise in counseling people affected by miscarriage, stillbirth, infant loss and pregnancy trauma. I found some sessions there very helpful.

Sending much love to you and your beautiful little baby and strength for the days to come. I hope you can say goodbye in a way that feels right xxx

Not for Edwards, but I have had two TFMRs. One at 21w, one at 15w. Both induction. I have an older DC, and we plan to try again.

It's horrible and heartbreaking and I'm so, so sorry you're experiencing this.

Definitely echo PP about bereavement care, it's absolutely necessary. Have you got a bereavement MW?

SANDS are phenomenal. As are ARC. There are groups on here too if you want to DM me.

Sending love, and gentle hugs.

A friend of mine had this with an unexpected pregnancy in her late 40’s.
She had no intention of having another as her two were all grown up and independent. She had just stared a new career.
She was heartbroken as she felt it happened because she didn’t want it, but then was too old for another after she had got used to the idea of it.
Hope everything goes well for you 💐

@ so sorry to hear you had to go through something similar but glad to hear you are doing well with your pregnancy.

@CorneliusBeefington thank you for sharing the charities and how difficult for you to go through this twice. Fingers crossed that you are able to go on and have a more positive experience next time. Xx