My baby’s been diagnosed with Congenital Diaphragmatic Hernia CDH

[K99M]

Hi there I’m currently 20wks pregnant with my first baby. After a Downs Syndrome scare, CVS procedure (which all turned out fine) at 17wks was told our baby boy had a left sided CDH. He has a hole in the left side of his diaphragm & his stomach & small amount (so far) of his bowel have moved up into his chest. This means his lungs may be damaged or not grow properly which can be fatal. CDH affects 1 in 2500 & baby’s with this have s 50% survival rate. He will need to go into NICU straight away until he is strong enough to have an operation to fix the hernia. We are devastated but trying to stay positive. He had a heart echo yesterday & apart from it being pushed over a little to the right thankfully all is ok heart wise. Next scan & meet with Consultant/Surgeons etc isn’t till April. Such a scary stressful time not being able to do anything for my boy. Just got to hope he Is a little fighter! It will be even worse once he’s born seeing him so poorly.
Just wanted to see if anyone else on here had gone or is going through the same? It’s a rare diagnosis & not many people have heard of it. We are under the Liverpool Women’s Hospital & Alder Hey so we have the best medical care & support possible which is s blessing.
Thank you for reading xx

Hi just read about your news. I too have alittle boy with left sided cdh. Im now 26 weeks and found out at 19. We are devastated and im constantly googling things. How are you and your baby doing now? Xx

Hi - I haven't experienced this, but I have a few NICU friends who have. If you've not already found them there are some good Facebook groups you can join for support.

There are some amazing things going on with treatment for CDH - Leicester for example is really good.

Wishing you both a short successful NICU stay.

By the way, OP, we spent some time in Alder Hey - they're amazing. You'll be in great hands.

My sister’s baby had a CDH but somehow it wasn’t picked up on scans and it was only discovered when her baby got very ill at 9 months of age.

The surgeon said he’d never seen such a serious case and that my niece’s entire stomach and some of her intestines were pretty much in the chest cavity. It was picked up on X-ray because she’d been having some breathing difficulties and it came as a huge shock to everyone, including the doctors.

She was taken to theatre and had a 10 hour operation and then two weeks into her recovery on the ward she had to for a second operation. She was ultimately in hospital for 11 weeks and it was a very worrying time for us all.

She was absolutely fine now though and is a healthy 9 year old girl.

She was followed up for a year post her surgery and the doctors were completely happy with her. They were all just completely astounded that somehow she has coped with the condition for 9 months before showing signs of being unwell.

She’s got two large scars, one that run from the base of her sternum all the way down past her belly button and then another one that starts at her belly button and goes sideways across her abdomen and stops at the top of her hip.

When she first got unwell we were all petrified we were going to lose her because of how poorly she was and it felt like a little miracle to watch her get better.

I’m very sorry to hear of both of your diagnoses, you must both be very scared.

I just wanted to share my story to give you hope that things can be ok and I hope things are for your little ones

And following on from the poster above me, my niece had her surgery in the Leicester Royal Infirmary and the whole team were wonderful.

Nothing to add OP but best wishes

Hi Stacyhartil
Firstly I am so so sorry to hear that you are going through this too. I know exactly how you feel. I am currently 33 wks now and pregnancy wise I have been absolutely fine, no morning sickness or anything really. Starting to get very tired & uncomfortable now though & these warm nights don’t help. My boy is growing really well though. Had our 28 week scan & meeting with surgeons & Consultants which made my partner & I feel a bit more positive. Nothing more has come up into his chest apart just his stomach & small bowel which we already knew. They couldn’t see his left lung because these were in the way but his right lung looked ok size wise. It’s all about lung function rather than size though so Surgeon said still 50/50 chance but he was quietly optimistic. Where about in the country are you? I’m on the Wirral & lucky enough to be under the Liverpool Womens Hospital & Alder Hey. They have been amazing. I too googled & googled till I drove myself mad. I’ve stopped doing it now as I think I know all I can, plus some things you read are misinformed & scare you even more.
I have my final scan at 36weeks then I’m being induced at the Womens on 9th July. They want me to have as normal labour/birth as I can as I can. When he arrives the Drs come in & intubate/ventilate him & get him stable. First 24/48 are critical but hopefully he’ll become stable enough for his Operation at Alder Hey. We are trying to stay as positive as we can as there’s absolutely nothing we can do to change the situation & positive vibes will be good for our little man & yours!!

It took me about 3 weeks to stop crying, getting angry & feeling lost. Knowing you can’t help your unborn child is horrendous. I couldn’t bring myself buy any baby stuff at all until I was 30 weeks. The thought of having all the stuff & not bringing him home would kill me inside. We’ve ordered our things from mammas & papas & they only deliver it when you say so. They were really good about the delicate situation abit more expensive but worth it for the peace of mind. How are you doing? & I still can’t bring myself to go to an antenatal class.

Really hope your ok, if you need to talk, vent or anything please do. It’s horrible to think someone’s going through the same but at least your not on your own. I cherish every kick I get, it’s hard to imagine he’s even poorly the way he disco dances in my tummy sometimes.

There’s a charity called CDH uk which are fabulous for information. I haven’t spoke to any one direct from there yet but may find they can help once he’s here. Have a look if you haven’t already.

Sending lots of love & positiveness!
I’m sure our boys will be little fighters!!!

Please stay in touch & let me know how it all goes.
Karen xx

Thank you to all for your kind positive words! Such an emotional rollercoaster xxx

Hi Karen,

Its helpful to talk to others going through the same, as many people havn't heard of it.
My pregnancy has been up and down to be honest, i do try to enjoy it but its always in the back of my head. Ive had a heart scan which came back all good and no defects, which is good news 🙂 also my MRI results came back with his stomach up and small part of the liver has gone up aswel now. I'm just hoping that it stays that way i dread the scans. I suppose it could be worse though. His right lung is good but left isnt.
My baby is a little small for how many weeks i am and i also have more fluid than i should. Which is so stressful I'm just hoping i don't go into premature labour.

I'm trying to stay positive and not worry i think all the monitoring helps and hopefully meet the surgeons etc soon.
Thanks for letting me know about mamas n papas i will have a look into that. I havnt brought anything since i found out. I'm to scared to. Also i don't know what to put in hospital bag because he can't wear babygrows etc. Have you done your bag?

Yes I've contacted cdh uk they sent me a lovely pack in the post. I havnt spoken to anyone yet though. My baby will be born in Birmingham women's & children's hospital they are all lovely.
I wish you all the luck and strength in the world and will be thinking of you and your boy. Xx

So good to hear his heart & right lung are ok! I had my second heart echo last week & it was good news apart from it being pushed slightly to the right it’s fine. I forgot to ask is this your first baby? It is for me, although I do have a 6yr old step daughter. Hard to fully enjoy the pregnancy with all that’s going on like you said.

I think at this stage it should pretty much stay as it is in terms of any other organs coming up for you. The Drs told me that nothing much should change in that respect from around 28 wks. I’ve been the opposite measuring big with midwife but Consultant happy with his size & weight at the moment. I’m sure your little one will be fine size wise. I’ll keep my 🤞🤞for you.

Glad to hear that you’ve contacted CDH uk & that you have a good hospital. When you meet your “team” Surgeons & Consultants it is abit overwhelming, but they do put you at ease. They’ll prob give you a date you’ll be induced if they haven’t already. So much can be done for our babies & it sounds as if they have the best chance they can be given. Hope you’ve got a good support network around you & your partner friend & family wise. I’ve been very lucky in that respect.

As for the hospital bag I literally went out this week & got a few bits together. Had to ask my midwife as like you I had no idea about what he’ll need in NICU. So far I’ve got:

A cheap nighty for labour & birth.
Slippers & light dressing gown.
Nursing nighty & PJs (as I’d like to try & express)
Breast pads
Maternity pads
Newborn nappies (as I don’t know if they provide them or not at hosp)
A baby grow (not that I think he’ll need it in hosp.
Some little hats
Need to pack a change of clothes, toothbrush, toiletries etc....

Midwife said take snacks, food & energy drinks. I’m sure I’ve forgot loads!!

I’ll be thinking of you too over the next few weeks. If you need any questions answering I’ll try my best, can’t guarantee I’ll know the answer but even if it’s just to check in & chat. Here if you need it. Talking to you has helped me loads so Thankyou for that just sorry it’s not under nicer circumstances.

5weeks 5days & counting till the Big Day now! It’s all getting a bit real & scary.

Take care of yourself & your baby boy 👶💙 Keep in touch hun xx

Just remember whatever he needs in Nicu that you forget is only a family or friend phone call away so don't panic about your bags. Or the shop in the hospital will sell most too.

My baby had a left sided diaphragmatic hernia, was born at Liverpool Women's Hospital and was successfully treated at Alder Hey. We are on the Wirral too. He's now 18, has just passed his driving test and is studying for his A levels. Some issues through childhood but we got there in the end. I'm happy for you to pm me if I can help you at all, or meet up for coffee. Thinking of you all.

Hi karen, sorry about the long delay i've had few down days. Hope you and baby are well. Not long for you now. How are you feeling?
I didn't know they give 2 heart echos. Ive had 1 atm. Its my 3rd baby i have 2 girls already. My youngest is 7 and very sensitive so dread when im in hospital and not there for her, but i do have a very supportive family which is good. 😊

Thank you so much for the hospital bag list its very helpful I'm starting to get bits now as i have extra fluid and could go into early labour.

I've been thinking about you and hope your ok. I bet its getting very real for you now.

Sending loads of positive love. Here if you need to chat 🙂

And thank all you other parents for your tips and lovely words 🙂

Hi Stacey

Sorry to hear you’ve been struggling, I think it’s normal to have down days tbh your human afterall. You may be surprised how well your 7 year old may cope to be honest. My step daughter took it all very well. & get that bag packed just in case....

You won’t believe it but I actually went into labour yesterday & had our little Oliver today! Weighing 5lb 4oz at 35 wks. He’s perfect! Even with a CDH! 😍😍💙😍😍

He’s doing really well but it’s early days yet. So in love with him already! 😍 He’s currently in NICU & will be here for approx 48hrs before being transferred to Alder Hey hospital hopefully for the Op.

I was originally only going to have one heart echo but the consultant decided to do another at 32 to double check really. His heart is actually good!

Cannot believe he’s actually here & im holding his tiny hand! Need to pinch myself!

He just needs to stay strong & so does your little boy too! Stay positive & try to enjoy him being in your tummy! Quality time with you his mummy! This is the really tough bit now he’s here so got to try & keep it together for his sake!

Thinking of you & sending love & positive thoughts hun. Always here xx

Congratulations! Hope he can be transferred for surgery very soon.

Omg Congratulations hun, i bet that was a shock for you. So happy he is doing well so far and yes your right stay strong. You've got this. He is a strong little solider. 💂‍♂️💙

Did u feel different before hand or was it a shock when you went into labour?

Big hugs
Stacy 😘

It certainly was a shock! lol But he obviously couldn’t wait to meet us! lol So happy he’s doing well. Still got to take each day as it comes though. Dreading his Operation but it has to be done! Fingers crossed it will be soon & over & done with!

I actually thought it was just painful braxton hicks but I was in labour....typical of me to get that wrong! With it being my first baby I had no idea what to expect really!

Hope your doing ok & that all your scans & heart echos etc are going ok. Thinking of you & sending positive thoughts xx

Congratulations! Hope all goes well with the op xx 💐

Hey Karen,

How are you and your baby doing?
Can't imagine what its like for you but you sound really strong. Yes it must be worrying for you about his op but he will be in the best hands and will be back with you asap. Are you allowed to stay with him on the ward as long as you want?

I'm ok i havnt had a scan for a few weeks now but busy with appointments this coming weeks so will be good to see how all is doing.

Xx

Hi, my little one has just been diagnosed with CDH and just wondering if there was an update for this thread? Hoping all is ok xx