My baby has diaphragmatic hernia - really worried

[anisha]

This condition was picked up on my 20 week scan. I am so scared that my baby will not make it. does anyone have any experiences of this condition.

hi anisha - so sorry for you - there was one lady i knew whose baby had this - had to be in special care for a bit when born and had early op to sort it but was fine in the end

hope all goes well for you

I'm sure that you are aware how serious this condition can be. I think that prognosis really depends upon lung development and any other associated problems (I assume that your lo hasn't got any other problems that were pickedup on the scan).

The good news is that this has been picked up antenatally meaning that your baby will get all of the medical attention he/she needs straight after birth.

I would reccommend looking at the contact a family website for parents of children who have rare conditions.

Best wishes for you and your lo xxx

Hi anisha,
I know it is very difficult but please try not to worry too much. Although I haven't had a baby with a CDH, I have looked after several (I'm a neonatal nurse).

There are varying types of hernia but don't want to go into too much detail because at the moment you'll have an awful lot to take in.

I presume you'll be having another scan very soon? One piece of advice I can give you, write down anything you think of that you would like to ask the doctors at your next appt. It's very easy to forget what you want to say at times like this.

I'm on mumsnet most evenings during the week and when I can at w/ends, if you ever need to talk.
thinking of you x

Thank you for your kind replies.

I have known about my baby's condition for 8 weeks and have read alot about the condition.

my baby has a left sided hernia with a moderate hole. Stomach and bowel are in the chest cavity.

I have told i will need to be induded at 38 weeks.

I'm so scared my baby may die. Half of babies do die with this condition. I have some really bad days and feel so down.

I want the doctors to tell me that everything is going to ok but I know they can't.

Thankk Cali for offering to chat xx.

Hi anisha i have been through this myself my baby is still in hospital at the moment and doing well he was 6 weeks early aswell so had that to deal with aswell but he did well he has a right sided hernia which is more rare and his hole was so big they have used gortex patch to fix it its amazing what they can do i know what you are going through you have to try and think positive about it at all times its hard but helps hope it all goes well for you. x

Hi anisha, sorry to hear of your sons condition. I am 25 weeks pregnant and our son was diagnosed with Cystic Adematoid Malformation of the lung. We are having to have extra scans and have to deliver at a hospital where there is a neonat unit as he will probably need surgery too. Although this is not the same condition i just wanted to let you know you are not alone with how you are feeling.

Friends of ours discovered their little boy had a diaphragmatic hernia a couple of weeks after he was born. He was operated on before xmas and is now at home doing well, i hope that gives you some reassurance hun.

Hi Anisha

Our baby daughter was born with a severe chd on the right side, she is now 2 half and although she has feeding problems and is oxygen dependant she is doing fantastic. She was in hospital for 5 months but alot of chd babies are not in as long as that she was very very poorly. To look at her now as an outsider you wouldnt have known anything was wrong. We know how hard it is the waiting, I wanted to stay pregnant and not give birth as she was ok in the womb and didnt know what to expect when she was born. Unfotunately no one can tell you whether baby will be ok or not as until they are born you dont know how much lung has developed. We have a website for Imogen which is www.imogendyson.co.uk there is alot of reading on it but it tells you our story and on the blog section is up to date photos. Feel free to contact us anytime for support.

Lindsey

Sorry me again Imogens was also a left sided CHD I dont know my right from my left!!!

Lindsey

And its CDH not CHD think Ive been drinking too much wine!!!

Thanks for all your replies. I have emailed you Linzjdee.

Linda 77 thanks for your kind words. I have 4 weeks to go and am trying to remain as positive as I can. Went for MRI scan last week and was given some positive feedback from the doctors.

Hope your baby is recovering well. xx

Hi

My son was born in 2006 with a CDH, unfortunately it was not identified whilst I was pregnant and as a result the midwife collapsed his 'good' lung.

After a very difficult week in intensive care he was then well enough to have the operation. He is now a fit and healthy 2 year old.

Although it must be extremely frightening to know you have a baby with this condition at least you will be in the best possible place & receive the best care from the beginning.

I am now pregnant with my 2nd child and extremely scared as a result but I just wanted you to know that things can work out well.

Best of luck.

There is an international organization for families of children born with CDH.

www.cdhsupport.org

Membership is free and there is tons of information.

HI i am 30 and have just found out today that my unborn baby has got a hernia on the left hand side, Very scared and trying to find some good websites but cant find any, Getting loads of different information. just wonder if any one can say what its all about, As i say its the left hand side.