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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

My baby’s been diagnosed with Congenital Diaphragmatic Hernia CDH

10 replies

K99M · 01/03/2018 13:25

Hi there I’m currently 20wks pregnant & after a Downs scare, CVS procedure (which all turned out fine)

OP posts:
Starla2525 · 01/03/2018 13:38

I haven't got any advice but just wanted to bump this post for you in case someone with any experience sees it. Hoping for the best for you though xx

QueenofmyPrinces · 01/03/2018 13:41

My sister’s baby had this but it wasn’t detected during pregnancy and it was only realised when she got seriously unwell when she was 9 months old.

Is it something your baby will require treatment for shortly after birth?

I’m sorry to hear about the diagnosis, it must feel quite overwhelming Flowers

Rockandrollwithit · 01/03/2018 13:48

Hi OP,

I don't have experience of this particular condition but my five month old DS was born with oesphagal atresia and needed surgery the day after he was born.

It's a tough journey having a poorly newborn and NICU was extremely difficult. I also found it hard to accept that my DS had a congenital abnormality, that he will suffer complications from this for his whole life. No one expects it to be them who has a poorly baby.

Be kind to yourself whilst you get used to this diagnosis. Have a look and see if there are any Facebook groups, I found a charity run one for my son's condition and it was really helpful to connect with other people in the same situation, and to see positive outcomes.

You can do this OP.

K99M · 01/03/2018 13:48

Thankyou Starla2525 & Queenofmyprincess!
My boy will need an operation to push his stomach & any other organs back down into his abdomen then close the hole in diaphragm. The worry is that his lungs won’t have had enough room to grow or will be damaged. Although it’s finally started to sink in & im trying to stay positive I just feel helpless.

Do you mind me asking how your sisters little one is? Xx

OP posts:
K99M · 01/03/2018 13:58

Thankyou rock&rollwithit
I’m so sorry to hear about your baby boy. I hope he’s doing ok now. Your absolutely right you never think it will be you. I guess nothing truly prepared you for any type of news like this but got to stay strong. There are some CDH charity’s on fb which I have joined & the hospital have told us about ARC so there’s a lot of support out there.
Thankyou for your kind words & I wish you lots of love & luck with your little one xx

OP posts:
QueenofmyPrinces · 01/03/2018 13:58

She is absolutely fine now, 9 years old and perfectly healthy.

When she was born she had breathing difficulties and was whisked away from my sister almost straight away which in hindsight was most likely due to poor lung development but at the time it was considered to be just one of those things that can happen in labour.

When she was a young baby she was always a poor feeder and poor to gain weight which looking back was probably because her stomach was siting beneath her lungs but that obviously wasn’t known at the time.

When she was 9 months old she started getting very lethargic, vomiting a lot and even had some blood on her vomit. She was admitted to our local hospital with suspected gastroenteritis but as the days passed she got much worse to the point she was vomiting faecal matter.

She was suspected to have a twist in her bowel so was blue lighted to a local children’s hospital but for some reason she seemed to really pick up so they discharged her without doing any investigations.

A few weeks later she started getting poorly again and this time they were blue lighted to a different children’s hospital and this is when the CDH was picked up on. She was in hospital for about 10 weeks in total and needed two large operations to repair everything.

The surgeon said it was one of the worst he’d ever seen and he had no idea how she got to 9 months old before she started to become unwell.

She does have large scars from her operations, one that runs down the length of her sternum and abdomen, and then which goes from her belly button and across to her left hip bone.

It was a very worrying time for us all but she’s absolutely fine now and loves hearing about her illness. At the age of 9 she finds it quite amusing that she was sicking up poo Grin

fortywinksfortyblinks · 01/03/2018 14:07

My neighbour's son was born with his bowel ourside his body. He is now a healthy happy nine year old.

I think he spent a wee bit of time in hospital after he was born. Their biggest problem, once the operation was over and he came home was that he couldn't sleep in silence as he was used to the beeps and whirrs of the hospital monitors!

I hope this puts your mind at rest a bit Flowers

Crunchymum · 01/03/2018 14:08

No experience with the actual condition OP but my 6 week old was diagnosed with a very rare genetic condition after birth (she was in neonatal from 3 hour old for the first few weeks of her life)

You sound like you are doing to right thing - joining groups and garnering information. I'd try to rely on informed sources though (FB should be fine!!) .... Not everything you read on the internet is informative Shock

What have you been offered by your hospital in the way of support? Are you under a fetal medicine team?

Best of luck and try to stay positive.

Rockandrollwithit · 01/03/2018 14:31

Thanks K99M 😀

He is doing really well at the moment, we have had some scary moments including a few blue spells but the first few months are over and they are the toughest.

Be prepared for a range of reactions from family and friends. Some of ours were really supportive until he had recovered from surgery and then it's like they assume that it's all better. It isn't - our surgeon says it's fixed but never cured.

I'm glad you have found some groups. It's OK to be angry and need support yourself. I found coming home after NICU tough and took anti depressants for a while. I still have a lot of anxiety about the future but I'm learning to take each day as it comes.

Trooperslane2 · 01/03/2018 14:38

A very good friend of mine's DD was born with this - again undetected until birth

The CDH charity is very good - please contact them and they'll help you through.

The wee lady is 2.5ish now and is a wee smasher and very well.

Flowers
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