Diagnosed with Edwards Syndrome

rabiit24 · June 2014

Hi All

I'm not really sure what I am looking for other than an outlet.

I am 23wks pregnant with a little boy after the loss of my little girl at 32wks in 2012. At our 20wk scan our consultant noticed some markers that he said we're common to Edwards Syndrome, small size (despite the size of my bump) and cysts, they carried out a CVS test and confirmed the diagnoses. I was immediately told the best thing to do was to terminate my pregnancy - which I clearly declined. Since then there has been little support from the hospital or specialists and any info that we have found has come from the net, which of course is full of horror stories. We were told that it was likely that he wouldn't survive the 9 months in the womb and that it would be likely that I will go into early labour. Recently, I have been having a lot of very painful braxton hicks contractions and he is definitely sitting lower in my womb - has anyone else experienced anything else like this?

I know that there is no happy ending for this and that I will at some point have to say good bye to my little boy just like his sister but I look forward to the time I do have with him and for the minute, at least, am incredibly proud to be carrying him.

xx

cMichelle0423 · June 2014

No experience but I'm so sorry you're going through this. Thoughts and prayers to you and your family.

rabiit24 · June 2014

Thanks Michelle

katiefritzler · June 2014

I'm so sorry for your first lost, and I'm sorry you're going through this with your second. I have no experience with this, so I can't help any support in that way. But I did lose two pregnancies before this one, and I know how painful and devestating it is. After this pregnancy, if it goes well or not, is there a possibility to get the cysts removed? Are they in your uterus?

Sorry I don't know much about it, I'm just curious to see maybe there can be a solution so if and when you want to try for your third there won't be any damage to the child.

I'm not trying to sound insensitive either. I know these things are painful. Sorry if I seem that way.

indianaalum · June 2014

I am extremely sorry you aer going through this. How awful.

I noticed the "babycenter" website has more specific baby threads, so perhaps someone over there has had more experience.

My only suggestion it to talk to them about doing possible genetic testing before you conceive next time around if you decide to try again since you have lost two babies in utero.

Again, I am extremely sorry for your loss

rabiit24 · June 2014

Hi Katie

of the little bits of information we were given is that this should no way affect any future pregnancies. Edwards Syndrome occurs when a baby has three No. 18 chromosomes instead of the normal two and happens at conception. Because this happens randomly it is extremely unlikely for parents to have more than one pregnancy affected by Edward's syndrome.

I think in this instance we have just been incredibly unlucky - I lost our little girl after a car accident so the two are unrelated.

xx

momthatlifts · June 2014

I'm so sorry you are going through this. T&P

amedbery · June 2014

I have no experience, but I am so very sorry you are going through this. Is it possible that your doctor or the hospital could refer you to some sort of support group? It may be helpful to speak with others who are dealing with similar circumstances. Thoughts and prayers are with you.

baloneydisc · June 2014

I have a friend of a friend who had a T18 baby in September 2013. She didn't find out there was anything wrong until the baby was born, but she's a little fighter, almost 10 months old. I don't really keep up with her on Facebook, so I'm not sure how detailed it is, but look for Hope for Jaelyn.

katiefritzler · June 2014

rabiit24 said:

Hi Katie

of the little bits of information we were given is that this should no way affect any future pregnancies. Edwards Syndrome occurs when a baby has three No. 18 chromosomes instead of the normal two and happens at conception. Because this happens randomly it is extremely unlikely for parents to have more than one pregnancy affected by Edward's syndrome.

I think in this instance we have just been incredibly unlucky - I lost our little girl after a car accident so the two are unrelated.

xx

Oh I see! Well I'm so sorry about your misfortune in both pregnancies. I hope someone here can offer you some relief in some way.

Justabean3 · June 2014

I'm sorry for what you are going through

rabiit24 · June 2014

Thanks for all your kind messages and posts of support.

Better day today, we've just come back from a pregnancy photo shoot and belly casting - we're definitely trying to make the most of this pregnancy. Xx

mrsH1112 · June 2014

I just wanted to say how very sorry I am to hear about whats going on with your little boy. Lots of positive thoughts and vibes your way.

[Deleted User] · June 2014

I had tears in my eyes while reading your post. I am so sorry for what you are going through. I don't have any advice or experience, just wanted to offer my T&P's. ((Hugs))

Disneygeek77 · June 2014

I lost my first child when she was about 4 months old. They believe she was born with something called VACTERL association and had three heart defects, defects in her trachea and esophogas and in her intestines.

If you ever feel like talking to someone who has been through something similar, please don't be afraid to reach out.

colettey_37 · June 2014

Prayers for you! I would not have terminated either, good for you for making the most of your pregnancy and celebrating the life of your baby. You are a good mama

Prayers for your LO and strength for you all. xoxo

katiescarlett1 · June 2014

That is so terrible, I am so sorry that you are going through this.

rabiit24 · June 2014

Thanks for the T&P's it's been difficult today - braxton hicks, the re-appearance of morning sickness (that was unexpected!!) and a lack of sleep over the last week all catching up with me - I have been somewhat emotional. Here's to a better day tomorrow! Xx

ZooCrewMom · June 2014

I have no experience with this but if you are not being supported and given information because your doctor and specialists don't agree with your decision I would find a different doctor and potentially a new hospital. If you have any Catholic hospitals in the area maybe they could help you find a new doctor who is on the same page as you and your family.

msmeg26 · June 2014

How are you holding up @rabiit24?

GinnyJ2012 · June 2014

I have no advice or anything to add but wanted to say that my thoughts and prayers are with you and your family.

staugustinewedding · June 2014

colettey_37 said:

Prayers for you! I would not have terminated either, good for you for making the most of your pregnancy and celebrating the life of your baby. You are a good mama Prayers for your LO and strength for you all. xoxo

Exactly this. You are an inspiration. ((((Hugs))))

rabiit24 · June 2014

Thanks all - much better couple of days. Back to work today bit stressful (construction), have had to explain the situation to work and I have been really surprised at how supportive they have been. What's the view on 4D scans? I really want to book one for now but I don't know if I'm better holding off for as long as I can? Xx

Tapsalteerie · June 2014

I'm so so sorry you are going through this. I truly admire your positive attitude and ability to defend your decisions on how you would like to continue. You are incredibly strong and I wish you only the best with whatever the future may hold for you.

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