To ask here about any experiences of CDH?(11 Posts)
I'm 36 weeks pregnant with my first baby, went for a routine scan today to have my world come crashing down around my ears.
My baby has a congenital diaphragmatic hernia (CDH) which is essentially a hole in the diaphragm meaning organs that should be abdominal have 'migrated' to her chest cavity resulting in under developed lungs and a whole host of complications.
I don't know why I'm writing this really, I don't know what I expect anyone to say but I don't know what else to do.
You are writing it because you are shocked and scared and want some help.
It's been a big shock for you, take time to process that and digest it.
Did they give you any more appointments to discuss it today? Or a plan for labour and delivery?
I'm assuming your baby will go to the neonatal unit when born. Often you can go in advance and see this. It reduces some of your fears/anxieties about baby's care.
Lovely big late night hug from here.
Sorry to hear that, I've no experience but couldn't not post.
Have they put you in touch with anyone to go through what this means and what you can expect?
She'll be intubated at birth because it won't be safe for her to try to breathe unaided then whisked off to the intensive care unit at the local children's hospital to see if she can stabilise enough for surgery. There's a 50% chance she will survive in some form if she had the surgery albeit with a lot of complications likely if she lives.
I've moaned so much about having a shitty pregnancy, I feel like I deserve to have her taken away from me because I didn't appreciate her enough while I've been growing her
Absolutely not! And you hve not been growing her badly!! Your wonderful body has been keeping this precious one safe so far.
None of this is in any way your fault. I know many people feel blame or guilt and that can be because so much is up in the air and uncontrollable at the moment.
It's so hard for you an your partner at the moment. Have you good support around you?
I know we can't predict what will happen for you and your baby, but neonatal care can do amazing procedures and the staff are very skilled. They are also a speciality that have honed their communication skills and will keep you well informed throughout.
This is not your fault. Everybody moans - it does not hurt their baby. This is not your fault: you are not being punished. This is happening because shitty things happen. You could have spent the last 8 months singing from the rooftops that you were in love with being pregnant, and she would still have CDH. There is nothing, absolutely nothing, that you could have done to stop this happening. There is noting that you could have done to cause this. This has happened because growing a baby is actually incredibly complicated, and sometimes, things go wrong.
I know you won't stop beating yourself up just because a stranger online tells you not to. But please try.
Have you managed to tell anyone what's happened yet? Is there someone there in real life for you? Because right now, I am in awe of you that you can even string a sentence together online. And you need someone to be there for you.
If you're ready for it, ask to see the unit in advance. They're usually happy to show parents round in advance. Is the plan for an elective section or delivery? If an elective section, you would still be awake, and could have your birthing partner in with you. There won't be much scope for pictures at delivery (the priority is getting your daughter stabilised) but might be a chance for a quick snap. Then we always do a photo as part of admission to SCBU (as has every NICU I've worked on), so that mum can get a picture back as soon as possible.
If you've just been hit by this today, it must be a terrible shock. If you think of more questions, they should have set things up so you have someone to ask. And don't be afraid to ask the same questions again, if you don't feel like you've got the answers straight in your head. Hoping you've had a chance to speak to at least the neonatologist (if not yet the surgeons) and not just the obstetrician? Always better to be able to talk in advance, as well as at the time.
Thinking of you, and big hugs.
No experience or real advice to offer but just wanted to send you and your precious baby my best wishes, I know that's not enough.
Please please don't blame yourself, you've kept your baby safe but soon it will be time to hand over to some of the amazing NICU doctors and nurses for the next step.
I know it's hard to avoid the guilt, DD was originally a twin but we lost the other baby in early pregnancy and it took me a long time to not blame myself. Sometimes things happen which are cruel twists of fate but this little one will still be your baby and you'll be its mummy, there is nothing in the world that matters more than that.
Sorry I'm rambling now, the advice above about visiting neonatal beforehand is good and talk to professionals so you know what to expect. Sending hugs
I've got great support IRL thank you, it's all that's keeping me going.
We're meeting the neonatal Dr on Tuesday but I don't know what I want to know if that makes sense.
We had to deal with a bad diagnosis from a scan, neonatal ICU and surgery at 5 weeks old. You have my utmost sympathy, it's horrible. Things I learned were: The Bliss website is v useful to help you understand stuff that might happen and how NICUs work etc. Our NICU were not able to show us round before so bliss was v helpful. When it was really hellish I just concentrated on putting one foot in front of the other. Deal with the next thing, then the next thing. If you have a DP then it's often a tough time in a relationship. Be kind to each other. That's what I learned, hope it helps.
There is an excellent charity CDH uk- I know someone who had a baby with it, born just before Christmas. He had keyhole surgery and is doing great. I think the charity has been really helpful to my friend. I think you can contact other parents going through it on there too.
I know a girl from school who had a baby with it. he did spend time in the neonatal unit and he had to have a tracheostomy but now at 1.5 he has just had that taken out and he breathes brilliantly on his own and is more or less perfectly healthy, goes to nursery etc. so sorry to hear what's happened. xx
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