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Right sided CDH (congenital diaphragmatic hernia) and amniocentesis.

(12 Posts)
Ashleigh73377 Wed 09-Nov-16 20:49:01

Hello, im Ashleigh!

So last Friday we found out at our 20 week scan that our little foetus has right sided CDH. The scan shows part of the liver is pushing up squashing the right lung and pushing the heart left. The surgeon said this may be a good thing as it is plugging the hole for now. They also found fluid in the baby - explained what hydrops is but said that isn't what it is yet.

As you can imagine endless reading has occurred and I've decided to go for the amniocentesis. Booked for tomorrow. This is because the outcome of the test will change the course of pregnancy if we find an abnormality. (Just to say I have so much respect for anyone who gives birth to a baby knowing they have a life limiting syndrome, I wish I was that strong)

So i'm trying To find out people's experience of choosing the amnio with CDH as a diagnosis and also trying to find someone maybe going through this at this point in time, would be nice to have someone who is currently going through it with me!

And a silly question - I have a chest infection at the moment meaning i'm coughing A LOT and hard, would that impact the chance of miscarriage? Very scared about this test because 1 in 100 seems a lot more likely than 1 in 2500... Which has obviously happened.

Thank you for looking

Nikki2ol6 Wed 09-Nov-16 21:29:29

Hello my baby has CHD (congenital heart defects) we found this out at our 20wk scan.we then had a special scan 5 days later to confirm it all and we were told our little man had a 1in5 chance of a chromosome abnormality. We too had decided if it was very bad we would terminate as it won't be fair on anyone. And if it wasn't so bad we'll we needed to know exactly what we were dealing with. So we got the amnio done and we're told th chance of miscarriage was 1in1000. I did have a few issues. I had 3 contractions that night 5 minuets apart. The 6 days later I had twinges 7 minuets apart for quite some hours. After that I was fine and I'm now 32 weeks. I waited 15 days for all of my results and they were normal. I did get 3 results the day after my amnio for downs Edwards and Pataus which was also normal. I'm not sure about all the coughing because I was told to rest for the rest of that day and no lifting and such but of course having a toddler I had to lift him and I have been fine except those few little issues. It is a terrifying time when they say something is wrong with your baby I know the stress of that. I never slept properly for throes 15 days it was awful waiting for those result I don't know how I got through it. I don't know how I will get through the birth and having him taken away to a different hospital. Stay strong

Jodie1982 Wed 09-Nov-16 23:32:09

Hi Ashleigh.
I'm currently 30+5 with a little boy with a left sided cdh, at the moment intestines and bowel are up, heart pushed over to the right, the right and left heart ventricles are a bit narrow due to them being squashed. My antenatal care has been passed over to chelsea and westminster hospital, having monthly scans on the cdh, the last LHR was 1.8 (lung to head ratio). I had an amnio done at 23wks it was ok, just a little achy n twingey for 2 days, results came bk normal.
I'm absolutely petrified of the birth and what will be happening afterwards, the thought of losing him and not bringing him home to his siblings is killing me, we love him so much already. I've not bought him anything, not knowing if he'll be needing it 😢
Dp and I have toured the nicu (neonatal intensive care unit) which was upsetting but also good to know where he will be very well cared for. You will get to do this later on. Have you contacted CDH UK? they provide advice and support, even send out lovely support packs, they also have a support group on Facebook. I'm at Chelsea and Westminster on 16th for babies nxt cdh scan and heart scan, hoping his heart hasn't got more worse and Liver stays out of his chest 😣 it's so scary. He's my 6th baby, getting that diagnoses on 9th sept was a bloody huge horrid shock 😢 any info or advice pls message me. I know how your feeling and thinking. Xx

Lovewatchingrainfall Wed 09-Nov-16 23:37:54

Hi Ashleigh I have a DD who is now 3 who was born was left sided CDH. (In fact her chances where very small of survival)

I did have the amino as well as other tests and she had an op in the womb. Feel free to message me and I can help where possible.

Also have you joined the CDH U.K. Page?? They are very helpful.

Thinking of you at this time. Try not to google as you can get so much mixed messages from different countries as they tend to do things differently.

Ashleigh73377 Fri 11-Nov-16 14:01:23

wow, thank you so much for your speedy responses, i read them all yesterday before my appointment and my mind was eased, it's so comforting to know people are making the same heavy decisions with the same reasoning.

Nikki - your reply really helped, if contractions had started i wouldve thought...'that's it, im in labour...etc.' so knowing you had them but they subsided was such a relief. I didn't know your little could be taken to a different hospital after birth though?! Is that purely because there is a more specialised neonates elsewhere? what about you transferring or staying on site at a ronald mcdonald house? Our hospital is Princess Anne's in southampton, i know they have a policy that if you live a certain number of miles away you have to be housed on site - especially if you are wanting to breastfeed ( i know the babies wont be able to feed straight away but it's nice to know)

Hi Jodie,
Your thoughts sound so so similar to mine, but you've reached 30 weeks!!! and the surgeon said to me as soon as the baby is born the chance of survival heightens! I dont want to buy anything either, but comforted by the fact that we know they will have time in hospital, so it's not being morbid, it's just knowing we have additional time to buy the most suitable things smile
I do have a question - your lung to head ratio information, i've never heard of that before, do you think they will start mentioning it at a later date? did they explain what it means? as in, is the surface area of the lungs supposed to match the head or something? (sorry if that sounds stupid!) I haven't had any symptoms from the amnio as of yet, the midiwife did show me the fluid they took though which looking back i think i could've done without! I felt relieved straight away after it was done though, I think I was worried the procedure would make me start contracting straight away or something!
Our first baby went to NICU when born (just to grow, he was 6wks early) so we know the layout but i think it might be nice to go again to ask the professionals some relevant questions, also it can't hurt to see it again!
I love that you have such a big family, what have you told your other children, do any of them know theres a risk involved? ours is only young so luckily won't remember any of the stress - i still think he is affected by my low moods though!
Has anything changed throughout your pregnancy, as in more organs rising up or anything like fluid etc...? thank you so much for replying, and im so glad you're in the last bit, this pregnancy will not be one we want to repeat the feelings of!

LWRF, hello! thank you for your reply. Congratulations on having a tough little cookie for a daughter! I love a happy ending, but of course you've really been through the mill, id love to talk to you more so will message! I have since emailed the charity who put me in touch with a facebook group so can see all the stories in there, it really is such a comfort knowing so many people have gone through the same thing, and theres always going to be someone with a similar story. I'll be in touch!!

thank you all, i feel a lot more positive - surprising how much more really!

Jodie1982 Fri 11-Nov-16 15:45:25

Hello Ashleigh.
Not much is mentioned about the LHR, it's only typed on my scan reports, consultant told me they don't actually look into properly till later on 😕 but it basically means how much lung there is, anything over 1.4 is good I've been told, it did start off at a 2, went dwn to 1.4 then back up to 1.8.
We are at risk of Polyhydraminos (extra amniotic fluid) I've been ok for now, nxt scan is on 16th, so will find out if that is still ok.
I'm worried about having to leave him once he's born as there's no accommodation and I live over an hours train n bus ride away 😣 it's a bloody nightmare.
All that has been in his chest since diagnoses at 22wks is bowel and intestines, I pray n pray it stays that way, no fluid or anything yet.
My children know he's going to be poorly, and that they won't be able to meet him straight away, but they do not know there's a possibility of not meeting him, I don't know if I should tell them that 😢 it'll break there hearts. They cried happy tears when I surprised them with his 13wk scan pic 😢 my moods have been low, i'm stressed n snappy, I feel awfully guilty for that but I can't snap out of it.
When do you have a nxt scan?

Nikki2ol6 Fri 11-Nov-16 16:15:20

He's being transferred because there is a special heart hospital for babies and children with serious heart problems so he has to go there to be on cardiac intensive care unit. I will be able to go once I'm discharged which I hope is very soon after he's born! We will be staying in the accomidation and I do want to breastfeed but he will most likely need tube fed a they said babies with these heart problems can't feed without becoming exhausted. But at least I can express and they can give that to him which would make me feel a lot better that I'm doing my best for him as I won't be able to hold him he's going to be in an incubator with a lot of machines attached I'm really dreading it and it doesn't Seam real at all! ,

Ashleigh73377 Fri 11-Nov-16 20:14:17

Oh i see, yeah actually i remember the surgeon saying he's seen lungs in the past that don't look good but when the baby is born actually function really well and vice versa. i'll look out for it though, it's interesting.

So so sad, it's a blessing that you have so many other healthy children but when you have to be the one who's strong all the time... very hard. Thing is, by telling your kids any more they'll worry about something that won't necessarily happen, I think you're right with what you've told them. That is awful.
I can't believe you have to be that far away either, does the NICU have at least a transition room for the night before the baby comes home?

so is the risk with polyhydramnios early laboour? thats what i was told but not sure its the only risk! How often are you having to go for scans?

Next scan is on the 17th but that is because i have a bicornuate uterus (2 wombs)

Nikki - Absolutely, That's exactly how I felt when Freddie was in NICU , you get a weird routine to the day where the only important tasks are being able to express for your baby and to sit with them whenever you can. A plus side is you'll be talking to people everyday who have vulnerable babies too, Although I have to say, feelings of jealousy might pop up when a family leaves - that's to be expected.

So the whole hospital specialises in cardiac problems, and you'll be in a neonatal ward within that? We weren't able to hold Freddie for 2 days and that was bad enough, it's all you want to do, it'll make that first time all the more special but for a while you might not know when that will be, horrible.

have the said you are aiming for a normal delivery? That will have a lot of say in how long you're there for! Also is the accomodation ronald mcdonald? I know partners can stay there but im wondering whether F can stay with us too

Lovewatchingrainfall Fri 11-Nov-16 22:06:08

I hope I can answer a few things here. Not all hospitals measure the lung to heart ratio as they can get it wrong and they don't want you worrying to much.

We stayed in a Ronald McDonald house and know that little ones can stay too so your little one should be able to stay.

Yes a risk of excessive fluid is early Labour my daughter was born 5weeks early due to this but they were also draining 4 litres a week from me at 26weeks every week. Due to me having so much fluid I was being scanned every week.

I will try and help anyone who has any questions if you want to talk.

Ashleigh73377 Fri 11-Nov-16 22:36:28

I can understand them not wanting to worry you anymore than needed!

Which hospital were you and your daughter at and how long were you in there for? An operation i'm your womb must have been SO scary, what was that to help with?

So did she then have to have the diaphragm repair after she was born? Also, were you sent home with oxygen/meds or anything?

And how is she now, any lasting health issues?

Nikki2ol6 Sat 12-Nov-16 10:41:41

Yea I can imagine watching another baby become better and go home would be amazing for that family for not for us to see. Also they have said occasionally they have to ask everyone to immediately leave the ward incase of an emergency. I think they mean a cardiac arrest. So I will be utterly terrified of even seeing someone else's child have that happen. I'm not sure if it's Ronald McDonald all I know is it's called Scott house. And yes we are planning a normal delivery they said these babies generally do fine during labour and delivery but he will need monitored to make sure he's doing ok in there

Lovewatchingrainfall Sat 12-Nov-16 20:17:11

i hope you do not mind but i have sent you a private message.

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