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Diaphragmatic hernia diagnosed at anomaly scan

(14 Posts)
Jodie1982 Fri 09-Sep-16 19:30:43

Absolutely devastated. Scared. In tears. Thinking the worst. 😭
I have been refered to the Fetal medicine unit at Chelsea and Westminster hospital, appointment for a scan and to see the doctors.
Has anybody been affected by this condition? Looking for some stories.
I saw an episode of OBEM that had a baby affected by it and he died 😢

ClosedAuraOpenMind Fri 09-Sep-16 19:42:26

hey Jodie
that must have been a shock for you..you're probably struggling to take things in
I'd never heard of CDH until my DD was born with one.....she weighed less than 5lbs and in our case it hadn't been picked up in scans and she was only diagnosed after birth.
her liver and bowels were in her chest cavity, her lungs were underdeveloped and her heart displaced (actually quite like the baby on OBEM)
she had six hour surgery to repair the hernia when she was two days old, and was discharged from hospital 2weeks later.
she's now a healthy, happy, stroppy, spirited 5yr old, so I wanted to let. you know that there can be happy endings in CDH cases
my DD has had no after effects from her condition, or the surgery, though she is still monitored by her surgical team (the NHS is fab)
I know we've been lucky, but there are good outcomes as well as bad
if there's anything you want to ask me about, just shout

there's also a CDH charity - I didn't use them but they might be helpful. think they're called CDH UK but you'll find them on Google
take care and best wishesflowerschocolate

Jodie1982 Fri 09-Sep-16 19:52:02

My little ones heart has been displaced to the right, i'm so scared for him. It's strange, I had a feeling something was wrong, bad dreams etc.
I can't imagine losing my baby. The thought of it is awful enough, he's my 6th baby and very much loved already. 😢

Jodie1982 Fri 09-Sep-16 19:52:57

I'll find out more on Monday at my appt at Chelsea and Westminster hospital.

ClosedAuraOpenMind Fri 09-Sep-16 20:01:02

couple of practical things - your wee one could have quite a long hospital stay so if you've got others you'll need to think about childcare
but ask about facilities for staying in the hospital, and try to sort out a pump if you want to express, as BM certainly easier for them to digest. think most hospitals can sort this out.
and just take things day by day - although I know that must be hard
I'm actually glad I didn't find out in advance as I would have been a complete nervous wreck.....instead in the space of about 16 hours I went from being induced, to an EMCS to then being told I had a seriously ill baby who needed to be taken to another hospital for care.
but because you've been diagnosed you'll have all the experts there straight away

KittyandTeal Sat 10-Sep-16 20:57:35

I'm sorry you've had worrying news. I don't know anything about that diagnosis but it sounds like it is hopeful for your baby.

I just wanted to point you in the direction of arc who support women and families with an antenatal diagnosis. They should be able to help you with what happens next, put you in touch with others who have been through it and talk to you about care plans etc.

TheDisillusionedAnarchist Sun 11-Sep-16 19:23:16

We had the same at 20 weeks although at birth it was a diaphragmatic eventration (floppy muscles) not a hernia. For us it was a sign of an underlying chromosomal anomaly.

They should offer you an MRI and a fetal Echo (cardiac scan) this will establish how significant the CDH is and if there are any other cardiac issues (DD's heart was also shifted and rotated). There is excellent treatment including fetal surgery for CDH now, survival is improving all the time. Hope things go well for you.

Jodie1982 Sun 11-Sep-16 20:52:56

Thank you ladies. I really appreciate your replies. I'm hoping to find out more at our appt tomorrow. The thought of losing him is making me feel ill, I don't think I'll be buying stuff for him not knowing if he'll make it. 😭 it's literally a living nightmare

Pythonesque Sun 11-Sep-16 21:31:09

Very best wishes for tomorrow. There's a substantial range, as indicated by the posters above; more tests and then monitoring will be important to allow the doctors to predict what is likely to be necessary. When they know enough I expect they will start to tell you what might happen when he is born, but that will still be subject to "if this happens" and "if that happens".

Take something to write things down on - and expect to use it on your way home afterwards! You'll think of questions you wished you'd asked; I think you will have some way to get in touch with the unit so be ready to write questions down as they occur to you, so you can ask them when you have a chance.

ClosedAuraOpenMind Mon 12-Sep-16 12:43:49

just wanted to say good luck for your appointment today - thinking of you

KittyandTeal Mon 12-Sep-16 15:58:02

Good luck today. I hope they can give you some more information

ListenToYourHeart Mon 12-Sep-16 16:05:20

Just to say - thinking of you, and good luck flowers

Jodie1982 Tue 13-Sep-16 18:50:25

Hello Ladies. Very thorough appt, had to have an Amniocentesis as she said there is a 20-30% risk of down syndrome or a Trisomy disorder. Results in 2 days. Luckily no liver was in his chest today. Got to go bk on 21st for fetal echo and 26th for another scan and see consultant. None the wiser really. 😣 xx

Lovewatchingrainfall Mon 26-Sep-16 22:04:55

Hi Jodie how are you doing? Have you joined the CDH UK page? They also have a private page for parents to talk.

I know all too well about the CDH process due to my little one having it. There are some amazing people out there who can help you. If you need to talk just message me.

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