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Congenital Diaphragmatic Hernia Rss

I was just wondering if anyone had had a baby or pregnancy where CDH has been diagnosed? This is my story and hopefully if anyone else is out there we can chat about things.

I went for my NT scan at 13 weeks and the measurement was 2.5mm so on the high side and the sonographer got all panicky and made me very nervous so a call to my GP and she referred me to the fetal medicine unit for an amnio at 14 weeks. We got to the amnio appointment and had a secondary scan and somewhat of a lecture from the doctor there telling us the NT result was not extreme and she wasn't sure she wanted to do an amnio because of the risks and half way through the scan she informed us that the baby had an even bigger problem that what I was referred for. She told us that the large black space on the screen was where the stomach, intestines and liver should be but that they were all crushed up inside the chest cavity ad the heart had been pushed to the right side and the lungs had not developed properly and would cease to continue developing due to the lack of room and pressure inside the chest. The diaphragm had a massive hole in it and was almost non-existant (the diaphragm develops at 8 weeks). Without been told I knew this was going to be bad but I didn't realise how bad. My case was extremely severe and to be so easily seen so early on the outcome was almost non-existant. I could of continued with the pregnancy but the outcome was going to be the same either way. There was less than 10% chance of survival even after many major surgeries and extended time in hospital and as far as mental and physcial development went the baby would of been severely retarded and have no quality of life at all with the high chance of spending what life it did have hospitalised. And the other thing that was told to me was that there was the extremely high chance of the baby dying well before my due date. It was a hard choice to make but at 14 weeks 5 days i was admitted to hospital for a suction D & C, as for me an induction was most likely going to end in another ceasarian which would of meant months recovering.

I know we made the right decision but it still is hard to understand why it happened and how - even though I have done a lot of research into it, it still lerks in the back of your mind. But I think finding a website and organisation dedicated to CDH and reading the stories of both survivors and non-survivors and getting the support from them and knowing things were never going to get better has made it a little easier to cope and deal with.

Now we are playing the waiting game waiting for results from genetics testing that is been done but hopefully once they come back we will be able to move forward and plan our future together.

I have not had the support of any of my friendsor family, even though they did not know I was pregnant (we wait till the 12 week scan before we make the annoucement and with the results we chose not to tell anyone, my friends did know I was in hospital and having surgery as DH told them and asked for help to watch our bubby, but they refused for what I consider to be selfish reasons. But my DH has been wonderful and there for me whenever I need him to be so I am lucky in that way.
hi,
I am so sorry to hear of your loss.


We lost a little girl to cdh in april 1998,it was not discovered until after she was born & it come as a huge shock she was also born with multiple heart defects sadly she lost her battle 7 days after birth.
Was the hernia on the right or left hand side maddison was on the right they say that it is less common on the right.
I really feel for you not having the support of family or friends to support you at this time.if you dont mind me asking how long ago did you lose your little one.I know what you mean about playing the waiting game with results it always seems to take longer then it really does, our result come back inclusive(sp) so we will never know why... hope to hear from you soon

If you ever want to chat just pm me
take care
belinda
It is an awful defect and the worst part is the doctors can't seem to find out why it happens which makes it worse.
It worries me that so many cases go undetected as it is not routinely looked for even at the 20 week scan - it seems like the medical system adopts the "if it happens we will deal with it then" not the "catch it early and be prepared" scenario. I know now they do give steriod injections and monitor cases found early closer and even ship you off to hospitals specifically set up to deal with CDH but that doesn't make the stress any less.
The hernia was on the left but due to the size it had spread toward the right side as well - it was a huge gaping hole that was according to the doctors almost impossible to repair even if we decided to continue and see what happened. This happened 5 weeks ago so it is still pretty fresh in my head.
It is a relief (not quite what I mean but I can't find the words) to know someone else in Australia knows what I am even writing about let alone been through it themselves, but I am sorry you also had to endure the loss.
Have you had any other children since Maddison?
Hi,
i have gone on to have 2 more children since we lost Maddison brendan who is 7 & Sam who has just turned 6 we also have josh who is 11.When it all happened i was very angry at the dr for not picking it up in my pregnancy as she also had multiple heart defects as well.i dont think enough research has gone into finding what causes it .do you have any other children?i understand what you mean about knowing of someone else having been through it & taking to them means alot.if you would like me to send you my email adress just pm me.i live nsw /queensland border.
take care
belinda
Hi, so sorry to hear of your story. The only thing you can do is make the best decision that you and your partner feel. On one hand, you were lucky it was picked up when it was.

Miss Prissy, I know what you mean about being upset about not finding out these things sooner. Not sure if you have read my post about my second DD but she has serious heart defects and was not picked up until I was about 28 weeks pregnant. I even have my 20 week scan report, which was also that 4D type scan, stating that the heart was normal and had 4 chambers, but part of her condition means that she actually only has 3 and a very tiny one! Another defect meant she had no blood flow through her pulmonary artery, that is the point of the red and blue colours on the scan! Grr...Anyway, I live in QLD, look forward to seeing you all around here! take care, Kristy.

3 Gorgeous Girls!

hi ladies
i am soooo sorry for your losses
my daughter has just been diagnosed with CDH a week ago and we are all in shock still this wil be her second baby and the DOCs seem to us to be cagey daughter is 14 wks and they are making her wait another 3 weeks for a more confirmation scan they call it
we sat her down with our GP and midwife and she wants to not keep it when they explained the outcome didnt look too great so we are all very upset and the internet may give u great info but its not current results here in NZof who can help/support/or even horror stories to compare he for the worst as she has severe ocd .
Str8lsd wrote:
hi ladies
i am soooo sorry for your losses
my daughter has just been diagnosed with CDH a week ago and we are all in shock still this wil be her second baby and the DOCs seem to us to be cagey daughter is 14 wks and they are making her wait another 3 weeks for a more confirmation scan they call it
we sat her down with our GP and midwife and she wants to not keep it when they explained the outcome didnt look too great so we are all very upset and the internet may give u great info but its not current results here in NZof who can help/support/or even horror stories to compare he for the worst as she has severe ocd .


Hey I just read all of these and wanted to say that not all cases of CDH have a bad outcome. Your daughter should wait for the results and have a good discussion with her doc before making any decisions. I work in a neonatal unit and when I first started we had a little one admitted who was born with a CDH but it was not diagnosed during the pregnancy. The baby spent weeks in ICU and then a couple of months in special care, BUT he went home without oxygen and was doing well. He did have surgery and it was a rough ride for his parents, he will need follow up too but more than likely he will go on to have a normal life.

The severity is different in each case, but I just wanted to share a positive story and to encourage you/your daughter to really weigh up the choices




Follow my blog "Bed Rest for Baby" at http://www.babysteps1804.wordpress.com

Hi, my boy was diagnosed with a CHD at 23 weeks, we were shocked and heartbroken, given a 50% chance of survival, we given the option to terminate and chose not too. Unfort as the pregnancy progressed his chances declines, as more organs moved into his chest, eventually it became 15%. The pregnancy was noneventual and labour very stressful, not sure how he would be. We were so grateful for his cry and fight when he were born. He spent one mth in the ICU it was awful but was home in 28days and breastfeeding totally. He has continued to amaze us intially slow to sit and crawl he was progressed quickly and starting walking at 10mth. We think back to the time we considered termination and so pleased we didn't. He is our superstar, but from the day he was diagnosed to leaving hosptial was the worse time in my life. We spent alot of time on the internet reading about cases and it was heartbreaking so I thought I would tell my story how things can be so successful and result in a healthy child who will never remember the awful early days.
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