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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Suspected Edwards syndrome

96 replies

Sid79 · 16/01/2018 09:19

Hi, I'm 20wks+6. Can't believe I've signed up to this site and am posting a thread. However have read many posts and found useful in past and now need help from anyone that has been in similar situation as me.
Went for 20 wk scan yesterday which took a very long time but basically markers of Edwards syndrome identified which alongside my 1:5 risk already identifies ties from bloods has suddenly rocked mine any husbands world. Can't believe how everything has just changed in the space of one day. Have been called back to see consultant again later today as was very upset and in state of shock yesterday. Have been googling most of the night which I know is not the best thing to do but needed more info. Our baby girl has been identified as having a strawberry shaped head, some cysts on brain and problems with heart. Have read many sites which state usually end up in miscarriage, stillbirth or babies die very shortly after (without going into too much detail).
Basically hard coming to terms with this but do not want my baby to suffer. Understand some people have terminated but some part inside of me (inc beliefs is opposed to this). Basically want to know if anyone is similar situation as me miscarried naturally and if so at what week? This is baby number 3, have two teenage boys and although unplanned I had so many plans for this baby. Everyone was so happy inc myself that I would be having my own little baby girl. Also worried about the effect it will have on my boys- we haven't told them anything yet. Can't stop crying and am sure anyone in similar situation will understand how I am feeling. X

OP posts:

sentenceinterrupted · 18/01/2018 08:15

I'm afraid we lost our Edwards baby at the end of the first trimester.

Wishing you all the best however things go.

Original poster

Sid79 · 18/01/2018 09:47

Ur posts really mean a lot to me, learning about ur individual stories and knowing that I am not alone in this nightmare situation.
Had the amnio test yesterday. Was an ordeal due to my severe phobia of needles but surprisingly not as bad as I thought it'd be. Just can't believe I got through it. My consultant at QMC is amazing. Can't believe I'd only met her on Tuesday and by the next day feel she knows and understands us so well. (If anyone wants to know about the amnio and what it entails or after effects- then pm me).
Now the waiting begins. Have been told should get results within 48 hrs.
Going through moments of being strong with Hubby, both saying this is God's will and we need to put our full faith in Him. Whatever he decides will be for the best. Understand some may not agree with this but at this extraordinarily difficult time, for us our faith is giving us strength that we did not even know we possessed. However, still such a heartbreakingly, immensely difficult time for us. Keep breaking down thinking about our little girl and the problems she has and the uncertainty of not knowing if and when I will miscarry. Don't even like that word. After 20 wks is classified as stillborn, which I prefer.
Apologies for long post, but it's the not knowing that is killing me. Will I go to full term and have a stillborn child, will she survive childbirth and then leave us? This on top of knowing that all I had planned for my beautiful baby princess has changed and she will either need lots of medical intervention, and be in pain or yet still not have the life or quality of life that she deserves. I just keep going through stages of crying, despair, utter grief or brief moments of strength upon relying on God.

Praying for a miracle.

The worst thing is, I feel like breaking down but then look and think about my two teenage boys, who since I have briefly told them that their baby sister is having complications, have become quiet and said they understand but have not asked any questions or cried and as their mother I know that they are are deeply upset by the news. Worried about them bottling this in. So despite feeling as though my whole world has caved in, as a mother I am having to show outwardly that I am ok and be strong for them.

OP posts:

SleepingStandingUp · 18/01/2018 10:05

It s be so hard being strong for everyone else. Can you find a safe place where you can have a good cry and let some of it out?

Roomba · 18/01/2018 10:22

I'm so sorry you are going through this, Sid. I don't know very much about Edwards other than talking to my friend and colleague, whose first baby girl had it. She was told at her 20 week scan, which had been delayed until 21+6 due to staff sickness. After a lot of thought she had a TFMR at 24 weeks. She feels that she made the right decision for their family, but also says she'll always have that 'what if?' in her mind , there's no right or wrong way of handling anything so cruel and painful.

Make sure you talk to people as much as you are able to, especially dedicated support organisations. My friend said when she returned to work afterwards everyone was lovely but treated her as if she'd just had a 'normal' miscarriage and skirted around talking about any of it after a few days. Then made happy comments about her having her 'first baby' when she had another daughter the following year. Talking to people who get it must be invaluable (and I don't as I know nothing so I'll bow out now ).

Original poster

Sid79 · 18/01/2018 10:30

Xx
I am crying and breaking down but going strong in front of my boys. My husband is my rock. He is supporting me so much and I can't even bear to think how I would have coped without him being there by my side very step of way despite feeling broken and going through the same grief as me.

OP posts:

SleepingStandingUp · 18/01/2018 18:06

Hopefully you will get your results tomorrow and at least you will know where you are x

missjulia · 19/01/2018 16:57

Hope you got good news today... thinking of you xx

Original poster

Sid79 · 01/02/2018 21:09

Update: results from amnio test came back positive. My beautiful baby girl has full trisomy 18. Heartbroken is an understatement. Know anyone who has gone through this or is going through this understand exactly how we feel.
Been feeling like I can't get enough oxygen and needing to open window or go to the door to get some air, have had severe pain across abdomen and ribs but been told this all due to anxiety.
Although I think I have accepted what has happened and just using my faith to help and guide me through this pregnancy. The thing that I am finding the hardest is not knowing what will happen when and also knowing that my precious baby girl may not be with me at all. Can't bear the thought of losing her.

OP posts:

Chocness · 01/02/2018 21:27

I’m so sorry 💐
I don’t have any experience of this but I read your post and just wanted to let you know you are in my thoughts. I feel terribly sad for you and your husband.

Original poster

Sid79 · 01/02/2018 21:43

OP posts:

weasledee · 01/02/2018 21:49

So very sorry Sid. We lost our baby to Patau syndrome last year, the hardest time of my life.
I wasn't as far along as you so I can't imagine the pain you're going though...
You're in my thoughts x

SleepingStandingUp · 02/02/2018 00:07

Oh Sid I'm so sorry. If you aren't already, and are on facebook, come and join the group, hopefully get soke ongoing support etc. I'll pm you a link xx

Original poster

Sid79 · 02/02/2018 00:33

Thanks for your pm. Have requested to join the fb group.

OP posts:

Original poster

Sid79 · 02/02/2018 13:14

Today is not a good day. Feel like my heart is being broken into two again and again. Currently sat at dentists with wisdom tooth pain but even that seems the least of my pain. Literally sat here and feel like breaking down. Trying to hold it in and thought I'd blog my feelings on here whilst waiting to stop me from crying out loud and breaking down here.
How did you all cope? The pain inside and heartache is undescribable. Yesterday I felt strong and know I have to accept whatever God has willed and that he will not burden us beyond that we can bear but today I feel like I can't cope or carry on.

OP posts:

Original poster

Sid79 · 02/02/2018 13:16

Had to leave the fb group too this morning as found it too painful.

OP posts:

SleepingStandingUp · 02/02/2018 15:41

So sorry Sid. We had post natal diagnosis and DS is mosaic so I have no real advice, jist virtual hugs. Once they're here it's just so all consuming but can't imagine the pain of waiting and fearing x

Mummyontherun86 · 02/02/2018 15:51

Sis, I know someone with a 5 year old child with trisomy 18. It has been really hard for them but their little one is now walking and going to a special needs school. They are big advocates that with treatment for heart conditions babies with this condition can live well. I understand that this is not how the NHS tends to proceed though and they were under a lot of pressure to end the pregnancy in anticipation of a stillbirth.

I’m so sorry you and anyone is going through this. Whatever you decide, follow your heart. They are no right ways of doing this. Xxx

missjulia · 22/02/2018 20:35

How are you Sid?

Original poster

Sid79 · 22/02/2018 21:39

Thank you for thinking about me missjulia. Heartbroken is an understatement...
Went for a scan on Friday 9.2.18 and there was no heartbeat. I lost my dear precious much loved daughter. I was induced for labour on the Sunday 2 days later. It was so hard going in to hospital with a bag packed without the many normal baby things I would have taken and knowing I would be leaving empty handed and have to endure a labour knowing my daughter was gone from this world. I had a stillbirth on Monday 12.2.18. Since then, days have gone by so hard with a rollercoaster of emotions. I have accepted that God had a better plan and she is in a better place, in heaven now. But some days feel lost and so alone. Miss her so much.

OP posts:

MrsPatmore · 22/02/2018 21:47

I'm so sorry to hear your news and I hope you have some support around you.

user1484830599 · 22/02/2018 21:52

I'm so, so sorry for your loss.

Ishouldntbesolucky · 22/02/2018 21:57

I'm so sorry for the loss of your little girl

intuition · 22/02/2018 22:03

So sorry for your loss. God may have a plan but it's still an awful ordeal for you all to have to go through. I pray for peace for you and your family. RIP to your much loved baby girl.

DailyMailFuckRightOff · 22/02/2018 22:07

I’m terribly sorry that your little girl didn’t make it. Heartbreaking and as I was reading I was really hoping for a happier outcome for you xx

Frazzled2207 · 22/02/2018 22:13

I am so sorry for your loss x

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