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Original poster

CDH - Congenital Diaphragmatic Hernia

36 replies

KZnJsMum · 07/02/2018 16:22

Hi,

I found out on Thursday my unborn baby has CDH.
Atm it's mild but this could change as he develops inside me.

Has anyone had experience of this?

They also think he has a genetical chromosome disorder but no idea what yet.

TIA

OP posts:
Original poster
KZnJsMum · 28/09/2018 23:07

Hi, been a while. I've had a lot to get my head around.
Well I had baby Vaughan on 13th May sadly he was born sleeping. He was perfect in every way.

We had his post mortem results on 17th July. He didn't have CDH at all my beautiful baby boy had trisomy 18 also known as Edwards syndrome. He weighed 5lb 6oz and was 19" long.

Vaughan Frederick Derek Nicholas Martin Hill born sleeping on Sunday 13th May 2018 sleep well my darling boy xxxxx

OP posts:
noseoftralee · 29/09/2018 01:16

Congratulations on the birth of beautiful beautiful baby Vaughan. I am so sorry for your loss. You kept him so safe and loved for the whole of his little life.

FrancisCrawford · 29/09/2018 01:23

This reply has been deleted

Message withdrawn at poster's request.

Original poster
KZnJsMum · 04/10/2018 20:03

Thank you, he really was beautiful. I miss him terribly but I know what happened was best as he was so poorly.

I don't think my heart will ever heal.
X

OP posts:
1987Laura · 04/10/2018 20:10

Hi i am so sorry for your loss. My baby girl had a severe CDH, hole in her heart, malrotation of her gut and cleft lip and palate. Consultant said she wouldn't have made it so we made the hard decision to go through a termination. I was 21+3. Was so hard. But on the bright side i am now 13+2 with our little rainbow baby

iamloading · 04/10/2018 20:12

I'm so so sorry for your loss. I found the SANDS forum incredibly helpful when I lost my little girl. Thinking of you x

Original poster
KZnJsMum · 12/10/2018 08:15

Congratulations xx

OP posts:
Original poster
KZnJsMum · 12/10/2018 08:16

I've just been muddling through. Have been to a couple of SANDS events x

OP posts:
autumnleaves1234 · 12/10/2018 08:21

I am so so sorry for your loss. It really is the most devastating thing imaginable losing a child. I hope you get through one day at a time. I’ve been so touched by your post and wish you strength in the times ahead

Worieddd · 13/10/2018 20:03

I am so sorry for your loss.
I have been where you are and I promise you it will get better. You will never forget but it will get a little bit easier to live with.

RIP baby beautiful Vaughan

Original poster
KZnJsMum · 26/10/2018 21:06

@Worieddd
I'm ok for the most part. Some days are harder though. I think the worst bit is the worry i have regarding my 1.5yr old now. I panic so much. X

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