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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:
endofthelinefinally · 07/02/2018 16:29

Yes. A family member's baby was born with a previously undiagnosed diaphragmatic hernia, in the days before scans.
The baby had emergency surgery soon after birth, then had to be kept propped up and given thickened feeds untill she was weaned.
That baby is in her 30s now with a family of her own.
However, there were no genetic issues.

lovewatchingrainfall · 07/02/2018 16:41

Yes my daughter was born with CDH.
Have you contacted CDH UK they are very helpful.

CrabbyPatty · 07/02/2018 18:14

I used to nurse babies with CDH. Every case is different so I agree with the above that you should contact CDH UK for support. Best wishes.

Original poster
KZnJsMum · 07/02/2018 18:40

I've joined the CDH page on fb. It's all so overwhelming. 😢

OP posts:
lovewatchingrainfall · 07/02/2018 19:02

It is KZnJsMum. i know how you feel. If you want to chat you can message me. You can hopefully find some amazing support on the CDH group. Have you joined there fb page for parents? or the main CDHUK Page??

Original poster
KZnJsMum · 07/02/2018 19:32

I think I've joined both. Tbh it's been a roller coaster this last week.

OP posts:
lovewatchingrainfall · 07/02/2018 20:45

I bet it has. The one thing which will not help is googling. Please don't google it.

Original poster
KZnJsMum · 07/02/2018 21:26

I came out the hospital and googled. I scared myself senseless.

OP posts:
lovewatchingrainfall · 08/02/2018 07:38

Poor you. Unfortunately google is not your friend in this case. As each CDh case is so different google just scares you. As I said I am here if you need to talk.

Original poster
KZnJsMum · 08/02/2018 20:17

Thank you.
I am seeing the midwives on 13th, and on the 20th I see the geneticist and another scan. I figured I'll know more than.

I have decided not to have the amniosentisis.

OP posts:
lovewatchingrainfall · 08/02/2018 21:35

Hope all goes as well as expected, and don't forget to ask any questions.

Thelampshadelady · 08/02/2018 23:42

I’m really sorry you are going through this.
This condition is a possibility for our baby. I’m having to wait til 28 weeks (4 weeks away) to find out 100%.
This follows being told the baby has its organs in the wrong places including its heart. They now think that was a mistake.
An extremely worrying time. Wishing you the best Flowers

lovewatchingrainfall · 09/02/2018 23:23

Sorry to hear you are going through the same thing @Thelampshadelady

Original poster
KZnJsMum · 19/02/2018 12:36

Back to hospital tomorrow for more scans and am appointment with the geneticist.

Hope you have some good news @TheLampshadeLady

OP posts:
lovewatchingrainfall · 19/02/2018 13:30

Have been thinking of you. How are you doing??

KimchiLaLa · 19/02/2018 15:38

Yes, someone in my close family. Baby is now a strapping 9 year old, lovely boy who does so well at school as is such a delight...health wise yes he does have to have regular hospital visits but he's doing ok. The doctors at GOSH have been amazing.

lovewatchingrainfall · 20/02/2018 10:53

Hope things go okay today @KZnJsMum

Original poster
KZnJsMum · 20/02/2018 10:59

@Lovewatchingrainfall I am ok. Keeping myself busy and distracted but I'm ok x

@Kimchilala that's reassuring to know!!!!

OP posts:
Original poster
KZnJsMum · 20/02/2018 21:44

Ok as promised an update on baby Vaughan.
His CDH (congenital diaphragmatic hernia) is still mild. The latest reports that only his stomach is in his chest. He will need surgery to bring stomach down and repair the hernia. His lung that is developed is a good size.
He still has his fists clenched BUT he's moving his thumbs. We've seen the geneticist and once he's born they will come over to neonatal and take a sample from his umbilical cord to check his genes and see if he has a genetical chromosome disorder.
I did have the decision to make on whether we had the amniosentisis or not and it's not something that I want.
We are meeting with the surgeon next week to discuss the surgery he needs and also induction date x

Vaughans 3d scan of his face and his hands.

CDH - Congenital Diaphragmatic Hernia
CDH - Congenital Diaphragmatic Hernia
OP posts:
positivityiskey · 25/02/2018 14:24

Hi OP. This is the first time I have posted on MN so I really hope I come across ok. I completely understand how you feel. I am 27 weeks pregnant with our first baby and we found out at our 20 week scan that our little boy has left sided CDH. So far part of his intestines have herniated but his stomach and liver are still down. We had the amino test done and the chromosomal results have came back clear. Having had 7 weeks to come to terms with his diagnoses I can honestly say it does get easier. It has became our new 'normal'.

We are being looked after by the Princess Anne Hospital in Southampton. We have met with the fetal medicine team and the surgeons. We have been advised that our boy has a good chance of survival, however they are reluctant to give any specifics. We have been given no information on his lung growth and have been told we will have to wait until he is born to see what damage (if any) has occurred. We have been told this is because they can't be sure either way by looking at scans (apparently the intestines and lungs are the same colour grey making it impossible to differentiate). It is so hard not knowing.
We have our next scan with on the 8th March. Fingers crossed nothing else has herniated and he is still growing well.
I am sending my love and support to your and your darling baby. I would really like it if we could keep in contact and support each other though this difficult time xxxx

Original poster
KZnJsMum · 27/02/2018 06:46

@positivityiskey
I have pm'ed you x

OP posts:
Original poster
KZnJsMum · 03/03/2018 21:48

If anyone is still here. After another scan on Thursday I decided to pay for a private scan which I had today.
I am overjoyed to say that baby Vaughan MOVED HIS FINGERS!!!!!

OP posts:
lovewatchingrainfall · 03/03/2018 22:04

Hi @KZnJsMum that's amazing to hear about him moving his fingers. How are you doing??

Original poster
KZnJsMum · 03/03/2018 22:06

Riddled with heartburn 😂😂 aside from that I'm ok

OP posts:
lovewatchingrainfall · 20/03/2018 15:44

How's things going? Hope your okay.