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So so scared. Congenital diaphragmatic hernia (CDH)

(28 Posts)
Sn00p4d Sat 24-Jan-15 14:12:57

I've made it to 36 weeks of healthy pregnancy only to find out yesterday at a routine growth scan that my beautiful baby has CDH.
Her diaphragm hasn't formed properly so organs that should be in the abdomen have floated away into the chest cavity meaning her lungs haven't had enough room to develop.
The survival rate is 50/50.
I'm devastated. I can't believe this is happening to her and to us, even if she survives this and the open surgery in her first few days of life to correct it she's going to have so many problems as a result of this.
I can't relate the baby kicking lumps out my insides to this poor wee soul on paper.
I won't get to see her or hold her before she's intubated and whisked off to NICU.
Can't believe it.
Please someone tell me there's hope. sad

FlyingSpud Sat 24-Jan-15 14:56:12

Oh snoop. I'm so sorry to hear that. thanks

I can't offers anything in terms of practical advice as I know nothing about the condition, but will hand hold.

What does your research on the subject tell you?

thanksthanks

MigAndMog Sat 24-Jan-15 14:59:37

Hi. Hopefully someone else will be along soon with more information but I don't know how common a condition it is. I know someone in the USA whose daughter has CDH - she is now a teenager. I know she has had a few operations and has regular check ups but she leads a pretty normal life. I could see if she knows of any support groups? I also have a friend who has 2 children with different conditions that have been picked up at scans and they have been given scary warnings about possible outcomes but the children have turned out to have a better quality of life than the worst case scenario given to them following scans. Most conditions have a whole range of outcomes and surgeons are amazing so I hope it all turns out well for you.

Sn00p4d Sat 24-Jan-15 18:15:09

Thank u both, research is a mixed bag so far, it's a "rare" condition, only affects 1 in 2500 births as far as I know, of those only 50% survive the week, there's very little information on survival rates beyond that or life expectancy as there just aren't many people living with it.

fireflynight12390 Sat 24-Jan-15 18:24:37

There was an episode on one born were the baby had cdh. It was really sad to watch but did chat about the condition abit and think the parents set up a website for support. My thoughts are with you x

FlyingSpud Sat 24-Jan-15 19:36:06

What support have you got around you in RL, snoop?

Radish9 Sat 24-Jan-15 19:50:56

How poorly she is and how much intervention she will need depends mainly on how well developed her lung is, and this partly depends on when the intestines moved into the chest. Was all well at the 20 week scan? Babies will do absolutely fine after surgery if the lung is developed enough to work well after the hole in the diaphragm is repaired and the intestines moved back to where they should be. The 50% chance of survival is probably not an accurate one at all - each baby with cdh has its own distinct set of circumstances. And some will have other issues (like trisomies or heart defects) that would not be compatible with life anyway. I'm sure if your girl had any other problems that this would have been apparent on your scan. It's really scary, but I'm sure she will be well looked after and you'll find out more information all the time. Good luck!

SilverStars Sat 24-Jan-15 19:54:03

Sorry to hear this.
Have you contacted the CDHUK charity - heard they offer good support, put you in touch with other people, send out packages of support etc.

Sn00p4d Sat 24-Jan-15 20:52:18

spud my husband, mum, mil, sil, good friends, I teach children with asn so by sheer coincidence have a few mums that have friends who've been through this, some with better outcomes than others but still a good source of support, just trying to be positive for everyone too and then breaking behind closed doors with DH at the moment.

radish she's got a lung to head ratio of >80%, right lung seems to be ok with some lung tissue on the left lung, intestines and bowel have migrated (left sided hernia) I'm unsure about the stomach but know the liver is currently where it should be. I've been in for steroid injections today and yesterday to help develop the lungs, I'm 36 weeks on Monday they're planning to induce me at 39 if I don't go myself beforehand to give her the best chance, at growth scan on Friday when this was picked up she was 6lbs3 so hoping with the steroids and another few weeks she'll be more and ideally she'll be in a better position to cope with the surgery. All was fine at 20 week scan, at that point she had a formed and visible diaphragm so the hole has appeared afterwards, results from blood tests and screenings all clear, no soft markers for anything else, heart is formed and functioning, not sure what the bits are called that pump the blood around and the oxygen to the lungs but both are working well and visible on scan, brain activity was visible too so looks like -I hope to god- this is the main issue.

I've been in touch with chduk and found their information helpful, until I read the newsletter and obviously with the success rate being what it is there were a lot of unlucky wee babies mentioned and it set me off again sad

mycdhlife Sat 24-Jan-15 21:34:30

Hello.... I know exactly how you feel as my daughter was diagnosed in utero at 19 weeks. It is a devastating birth defect but I am here to tell you there is HOPE! I've started a page for parents on facebook. It will help to know you are not alone and there is a TON of inspiring stories on our page. https://www.facebook.com/raisingcdhkids Also my daughter's blog explains a lot. She's given many a reason to smile, dream and carry hope. avaslifewithcdh.blogspot.com You can email me anytime at mycdhlife@gmail.com. I've been where you are. It is a ling and unknown road but there is GREAT faith, love and hope for you and your baby.

bubalou Sat 24-Jan-15 22:46:48

Hey OP.

I really can't help but couldn't read your post and move on. Just want to give you as much support as I can.

I'm 21 weeks pregnant and just found out after my scan and then further tests and scans that our unborn boy has TGA (transposition of the great arteries) long story short his 2 tubes in his heart are the wrong way round.

He will also be taken away from me as soon as he is born and have open heart surgery.

It is horrifying to find out something so devastating about something so little that you love so much. I only found out 3 days ago and have been given lots of information, help and support - have you had any help with this?

There are lots of charities and places you can speak to someone.

Sending you lots of love.

Sn00p4d Sat 24-Jan-15 23:38:08

Aw bub I'm sorry, I know exactly how you feel, it's a surprisingly similar surgery I think. The plus side hmm for me is that I've only got three weeks to go now as they're inducing me at 39 weeks for safety. Longest three weeks of my life no doubt. If u need someone to talk to/at pm me x

mycdhlife thank you I've liked the page, is it predominantly in the USA? Just I was looking at a post about LHR and didn't understand the ratios as mine was given as a percentage (80%) I had thought it was ok until I saw rope saying 2.something?! Confused lol, doesn't take much at the mo x

bubalou Sun 25-Jan-15 08:27:30

Thank you sn00p. I hope that didn't come across as ' I have this problem' - I just wanted you to know someone similar is on here if you want to talk.

It's amazing what they can do nowadays. They have given me a rundown of the surgery for baby and it's incredible. Terrifying but incredible and I'm trying to be positive that at least nowadays our babies have a great chance. Not so long ago and that wouldn't have been the case.

Please post back any time - even if you want to discuss irrational thoughts, fears and worries that I know I have gone through over past few days and mine is still 3 months away!smile

Crownjewel Sun 25-Jan-15 08:34:09

Sn00p and Bubalou, I'm afraid I've nothing to offer by way of practical advice but I do want to say that you and your babies are in my thoughts. Sending thanks to both of you and wishes for positive outcomes xx

ARandomFridayIn2012 Sun 25-Jan-15 08:43:32

What you've said about your particular case sounds positive esp as not noted at your 20 week scan. Thinking of you and your precious baby. Hope you make it to 39 weeks. Please come back and update if you can.

Radish9 Sun 25-Jan-15 09:24:21

I agree with Random, Sn00p, it sounds pretty positive an your girlie's case. Still, a nightmare for you. Fingers crossed, and let up know how you get on x

Fleurchamp Sun 25-Jan-15 10:50:35

sn00p I am the auntie of the most amazing 4 year old niece. She was diagnosed with a left side hernia at 36 weeks. Nothing at all untoward at the 20 week scan. This was devastating news as we have previous experience of this in our family (a much bigger hole, discovered at 20 weeks) where the outcome was tragic.
My sister went into spontaneous labour at 37 weeks (I am convinced the stress brought it on) and my niece was born weighing 5lb.
She ended up having two operations within 6 weeks.
You would not think there had ever been anything wrong with her now (except for her scars which she is very proud of). She is a lively, cheeky grin beautiful little girl <wells up just thinking back to her early days>

It's an awful time, I do feel for you but hope that you can keep positive. All the best xxx flowers

Sn00p4d Sun 25-Jan-15 10:56:43

Aw fleur thank you for that.
It's not easy to find stories with positive outcomes but I'm living In hope I'll be able to write one x

mypurplelife Sun 25-Jan-15 12:12:20

My daughter was born with CDH. She was diagnosed at 3 weeks old and is now nearly 9. She had surgery to repair a small hole and is fit and healthy now.

The CDH UK charity is amazing for support and advice. The web page is www.cdhuk.org.uk or you can call them on 08007316991 - they will help you.

teckiemom Sun 25-Jan-15 21:27:23

I'm so sorry you are having to go through this but we wanted you know there is a wonderful community of CDH families that are here to support you!

CHERUBS is charity that has been supporting families affected with CDH for 20 years. We have over 5,000 families in 60 countries, all standing together to fight CDH and support the families affected by it! We have many, many survivors including the son of a daytime television star in the USA (he is 23), "So You Think You Can Dance" (USA) 2014 season 11 top 8 finalist Rudy Abreu (he is 19), and the grandson of a US senator (he is 5) and many, many others.

Feel free to check our website at www.cherubs-cdh.org.
We are on Facebook at: www.facebook.com/cdhsupport

You can also register for a free membership which will give also give you access to the private CDH Forums & private Facebook pages where you can connect with other families.

We also have some awesome reps in the UK that support families throughout Europe, including a past member of our Parental Advisory Board. :-)

Many prayers & positive thoughts coming for your family!

Shelly Moore
CHERUBS Prayer Committee Chairman
CHERUBS Parental Advisory Board (CPAB) volunteer
Grandma to CDH’er Jayden Gilbert

Sn00p4d Sun 25-Jan-15 22:21:47

Thank you teckiemom I've found the facebook page through one of your UK reps and have already been cheered up today by some of the survivor stories.
It's a relief to hear of people who've come through the other side as I'm only too aware how dangerous CDH is. I'm glad in a way it was detected when it was as my child will be cared for by the best team in the best place for her if I wasn't chocolate dependant and of questionable bmi I wouldn't have been due the growth scan anyway so if I ever needed an excuse not to diet it's this

teckiemom Mon 26-Jan-15 00:32:17

So glad to hear it is giving you some hope. That is SO important! :-)

Teckiemom (Shelly)

bubalou Mon 26-Jan-15 08:40:47

Glad you are feeling a little better snoop.

Please keep us updated on how you are getting on. smile

notarehearsal Sun 01-Feb-15 18:12:26

My DD is now 28 and now has her own ( healthy) 15 month old DS. She was born with a left sided CDH and operated on to repair immediately after birth, as was done at that time. I do admit the early years weren't always easy and she did tire more than her peers. However, she's now perfectly healthy and leads a completely normal life ( this was directly following some extra surgery at age 16)
Her diagnosis was obviously before the Internet age and my exDH and I were terrified and devastated and my heart goes out to you
Hang in there and please pm if you need any further info

Roooster Thu 05-Feb-15 20:24:49

Hello snoop I am so sorry to hear this- my daughter was diagnosed with lcdh late into the pregnancy as well . The good news is she is now 18 months old and you would never know there was anything wrong with her smile - so there is definitely hope! They found small intestine and bowel tissue in her lung cavity so it sounds like a very similar situation to your little one. The surgeons and staff are absolutely brilliant, they operated on day 2 and 10 days later we were rooming in for the night at our local hospital - we were at st Thomas , I was induced at 39 weeks (it was fine, just very quick which is no bad thing!) and I was happy to have the nicu team take her because I knew it was the best thing (and they were all lovely). I don't know if you plan on breastfeeding but I was shown how hand express colostrum by the midwives there (from 37 weeks) and I kept it in syringes in the freezer so she would be able to benefit from colostrum when she was born. I don't know if it is related but when my milk came in there was loads of it (I pumped and saved initially) and that definitely helped when it came to her trying to latch for the first time. It also made me feel like I was doing something to help , if that makes sense because you do just feel so helpless!
It sounds like your little one is going to be a good weight too which is brilliant for going into surgery so try and keep positive, look after yourself and your little one and if you need to just cry (I did)! If you want to talk anymore then please just send me a message smile as people have said before the cdh uk boards on Facebook are also really supportive - good luck xxx

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