Cystic Hygroma Pregnancy

LegacyUser

Regular site user but going anon for this. I know there is a pregnancy forum but my wife browses that so I decided to post in here instead, hope thats ok mods.

My wife is 3 months pregnant, we found out relatively early into things as it was planned.

Everything was going according to plan until today when we went for our 12 week scan.

The doctor spotted something was not right with our baby and told us it has a cystic hygroma. In more than 50% of cases it can lead to the child having downs, Turners syndrome, heart defects and a number of other syndromes and problems. It can also lead to fatal foetal abnormality and it carries a strong risk of miscarriage.

To say we are devastated is an understatement. Its our first pregnancy, we got married this year but fell pregnant very quickly which surprised us as my wife is 37 and Im 36.

We are both in complete shock and I dont know what to do with myself. Im trying to hold it together as best I can but when I think about the baby, hearing its heart beat today, seeing it on the ultrasound, I just break down.

We are booked in for a CVS test on Monday and seemingly it takes about 3 working days to get initial results back which will tell if the baby has downs or one of the other syndromes.

The doctor told us that it is pretty rare, about 1% of pregnancies have it, and that in up to 50% of these cases it corrects itself by 20 weeks but of course, we are fearing the absolute worst.

We had thankfully only told a handful of people about the pregnancy up to now but we both feel so overwhelmed with grief that I dont know what I can do.

Of course we wont know exactly where we stand until next week which will no doubt be the most excruciating week of our lives.

Id really love to hear from people that were in a similar situation if possible. Im not looking for anyone to set my mind at ease as I know things do not look good but if someone has gone through this before Id appreciate if you could share to let me know how you coped.

Thanks for reading.

natec12

Didn't want to read and run, my brother went through a similar situation last year. The wait from the cvs to the results will be the longest wait of your lives. Keep busy it'll make the days go faster. Involve family if you can. I know you've only told a few people but you need the support, and it will help both you and your wife in the coming days. Wishing yous all the best.

Wompa1

Not quite the same. I'm in the US. They have a lot of different scans that we don't get by default in Ireland. But during 1 of the scans we were told there was a chance of trisomy 18..had to wait for further tests to come back. There would be a high chance that the child would not make it or would die young. We had to talk about the eventualities during the waiting period. I wish you guys luck.

In the US. I feel they lean on the side of caution...so maybe it's the same there. Was the nose developed at all?

It's a pretty special feeling when you see the Ultrasound for the first time. It is a real rollercoaster of emotions when they throw out the possibility of something wrong. If something is wrong and you guys need to talk about what to do. Try not to beat yourselves up. It's a difficult decision either way and I feel there is no wrong choice or at least that's what my fiance and I told ourselves.

LegacyUser

Have not quite been there but have had early pregnancy problems. They err way, way, way on the side of caution. Am on pregnancy no. 2 and have had early bleeds in both. Stats of miscarriages were given to me when I was scanned in both cases. Baby no. 1 is just fine, so far so good with baby no. 2

I am not criticising the system here, I am simply saying that I have found medical staff to be extremely cautious. They will always tell you the chances of things going badly. Baby no 1 spent several nights in NICU after birth - they left me in no doubt as to the possibilities that could arise from her symptoms (won't go into it here). They were reassuring, but by no means were they sitting there telling us it would all be fine.

It is going to be a long wait to be honest. The first 12 weeks of my pregnancy (both) have been the longest wait ever, hanging on for the 12 week scan (in our case). You run the gamut of emotion. It's the first time you truly realise that medicine can only help you to a point, that nature rules all and that you really have no control. Time helps you accept and put perspective on many many things. I pretty much spent 9 months first time around in terror of something going wrong. It was the longest 9 months of my life.

Unfortunately you have to hang in there. Tell family, use their support, you will need it. Don't assume anything, and look after each other. Take it day by day and take any bit of professional or personal support offered to you. Medical staff are extremely skilled at dealing with these situations and they will the do the best they can for you. Don't be afraid to talk to them about how you feel.

I wish you the best of luck with it all.

LegacyUser

OP here.

Thanks for the replies folks.

We are in today for the CVS test at 3. We are both pretty scared.

Some of the shock and heart ache has subsided over the last couple of days. Friday was such a shock to the system and I was so completely upside down with it all.

Ive been doing alot of reading on cystic hygroma and although it can in alot of cases it can lead to tragic results, there are also cases where it corrects itself and the baby is born healthy so Im trying to remain positive but then the thoughts of what can happen come back to me and I start to struggle again.

We will find out on Thursday if there are any chromosomal abnormalities like Downs or Turners. If the results come back positive we honestly dont know how we will handle it or what we will do. There are options but we are trying not to think about that decision, whether thats a good or bad thing, I dont know.

If the tests come back negative we have another two week wait to see if there is any abnormalities to the baby's growth, potential heart defects and other possible problems.

My wifes sister is with us for a few days but they have not discussed anything relating to this but my wife is trying to not think about it too much, as difficult as that is.

The next few days will be extremely tough but I know we will get through it somehow.

Thanks for reading.

bp

I have no experience of what you are going through (thankfully two healthy children), but couldn't not comment. I really hope it works out for you and your wife

LegacyUser

OP here.

Scan went as well as can be expected. Due to the positioning of the placenta they were not able to use the needle to do it as it could have traumatised my wife's bladder so they had to do it vaginally which was basically like a smear only deeper, they took a sample of fluid and tissue from the placenta.

She found it tough understandably but not too bad. She is a bit sore today but nothing unbearable thank God.

We discussed with the doctor the size of it (the hyrgoma) He said while it is small/subtle (his words) its there, so just because its on the smaller end of the scale it doesnt necessarily mean its less likely that our baby has chromosomal problems.

Ive decided not to read anything more on the subject online because the horror stories make me fear the worst but I dont want to have false hope by reading the positive ones either. We asked how many cases of this he sees and he told us that its approx 20 to 30 per annum out of around 8000 pregnancies so it is something really rare. The midwife told us that they had two births recently that had the same thing and both were born healthy but that makes me fear that we are going to be the other side of the statistic in that it doesnt have a happy ending.

Im trying to just be as balanced as possible, as much for my wifes sake as for my own.

Its not easy though.

We should get the results in the next 48 hours so the wait is just the killer.

Please God we will get good news.

LegacyUser

I'm so sorry that you are going through this. It is an extremely hard thing to face and the wait for results must make it even more difficult. I really hope it all works out o.k.

I have not personally gone through this so have little to offer in words of comfort but very good friends of mine went through this in the past few years and it was absolutely heartbreaking to watch! I hope that you have a great support network around you& please do talk to anyone who can help you make sense of the emotions & thoughts flying around your head.

In my friends case, at around 3 months of their pregnancy a test was done for a variety of syndromes- all results were negative. The doctors opinion was that although the baby did not have those syndromes he did feel it very likely their child would be born with issues. They choose to continue with the pregnancy & their baby boy does have a number of medical syndromes. I don't want to undermine the fear, anguish and upset of what happened as I think that & the babies medical conditions has had a huge impact on their lives but they are absolutely wonderful parents. They are stronger than ever as a couple & the closest family unit you would ever see!

Wishing you all the best.

Knine

I read your post & had to reply. I had a normal pregnancy so imagine my shock when my baby was anything but normal. She was completely floppy, could not feed & had a heart murmor amongst other problems. It was very obvious she had a genetic syndrome.

I wasted the first 2 years of her life being shocked that she was not the baby I had hoped for........... I was told she would never walk or talk or do much.

Roll on 7 years & I have this amazing child who has astounded all the experts & medical professionals. She walks, talks, curses :-)
She has a very happy unique personality & has brighted the lives of everyone she meets.

I'm not gonna say life is a walk in the park. It certainly has been a hard long road. My child has a genetic disorder that makes Downs Syndrome seem mild. I have met some amazing people because of her.

I have everything crossed that all will turn out fine for you both but I have told my story so that you know that even if you get news that is hard to take, it is not all doom & gloom. I would never want to change my daughter. She is a fantastic young lady.

The very best of luck.

LegacyUser

I really hope your news is good, but if it's not, don't be afraid to ask for help and support. Life can really throw curveballs when kids come along.

I think avoiding Google is a good choice at this stage. Once you have some information, all Google does is throw up the worst case scenario results for things, so until you know something definite, maybe steer clear.

Best of luck.

LegacyUser

OP here.

Thanks for sharing Knine.

We were both back in work today which for me proved a good distraction but for my wife it was quite tough. For the last 2 years nobody in her office has had a baby and now in the space of a month 3 people have announced they are pregnant.

She was pretty upset when she got in, she's dreading having to spend the next number of months listening to chatter about pregnancy if we do get bad news. My heart goes out to her, I feel so bloody helpless.

The doctor told us we should have the results tomorrow but possibly tonight as he makes calls up till 11 at peoples request. We asked that they leave calling us until the evening time as it would be better if we are together should we get bad news. Her phone rang a few minutes ago (it was her friend) and I swear to God my stomach just dropped.

I just have a horrible feeling that we are going to get bad news, I have moments of positivity and hope but then all the negatives come crashing into my head and I feel like Im going to vomit.

I honestly have never felt anything like this in my life and I would not wish it on my worst enemy.

ibarelycare

Really hope it's good news for you OP x

Call me Al

My heart goes out to you. Your emotions are perfectly understandable, in fact it'd be odd if you weren't feeling as you do.
Just remember that once you have definite answers you can make plans with your medical team.
Knowledge will be empowering for you.

I've everything crossed that you get positive news.

zoe 3619

Don't really know what to say,but I can imagine how difficult this must be.thinking of ye both and sending a hug.hope the news is good.

LegacyUser

Op here.

No news yet. They had told us we would have the results yesterday evening. We hadn't heard anything so tried the hospital to try and get the doctor around 8.

He couldn't be found and then at around half 10 we got a call from him to say the results weren't in yet so it was an evening of hell topped off by another day of hell today.

He said we should have them today so I hope to god we do, the thought of having it hang over our heads until Monday is turning my stomach.

Even if it is bad news, we just want to know.

Toots

Ah god that's terrible. I really hope you get good news today, being in limbo like that is just horrible.

irishgirl19

I have everything crossed for you OP. Can't imagine how you are feeling

cazzer22

Thinking of you both. Hope everything goes well X

LegacyUser

Our baby has downs.

Heartbroken....

celligraphy

Sorry to hear op hope you and tour wife will be ok, it's really up to you both now if you decide to keep progressing with the pregnancy if nit it is totally no one's business but your own if you decide to terminate.

Sorry if this offends anyone

zoe 3619

So sorry.good luck.would hug you if I could.
Be there for your wife,and I hope she's there for you.

ibarelycare

Devastated Dad to be wrote: »

Our baby has downs.

Heartbroken....

I'm so sorry you're heartbroken. What an awful feeling for you and your wife to go through, I can't imagine.

I have two relatives with Down syndrome who are both full of life, happy, loving and loveable people. However despite that, if I was in your position I don't know what I would do.

The decision as to how you carry on needs to between you and your wife and no one else. You two are the ones who have to live with whatever you choose to do. Don't let other people guilt or bully you into a decision one way or another.

Best wishes x

mud

I can't advise or make you feel better. Yourself and your wife need to mind each other and get through this together. Life can be rough and tough.

All the best wishes to you.

LegacyUser

Hang in there together, whatever you decide to do.
Best wishes to you both.