# Cystic Hygroma?



## iiMUAH

I am 19 weeks pregnant and my baby boy was diagnosed with Cystic Hygroma today. We have known all along that his nuchal fold was thick but this is the first time they've given it any other name and I don't think it's exactly the same thing.

I am worried to death that I am going to lose him. Could anyone give me some more information on the outlook for a baby with this issue?

Experiences? Good and bad?

They didn't tell me anything about Hydrops showing.


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## Emerald87

I'm going to direct a friend of mine your way - she has a great story :)


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## gigglebox

i have been summoned!

hi muah :) i was in this situation. they gave me a very bleak outlook on things and basically said my baby either had a chromosomal disorder or a heart condition. thankfully he was born with neither! the CH diagnosis is extremely tough. the biggest obstacle is the chromosomal test (either a CVS or amino. they are basically the same).

is the measurement getting larger? smaller? the same? will you be testing?

also boys generally have better outcomes with this, from what i've read :thumbup:


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## gigglebox

here is a link to a TON of success stories:
https://community.babycenter.com/po..._success_stories_for_all_those_that_need_hope

here's my story in a nut shell, but the whole adventure is in my signature:
Date CH was discovered and description (size, septated etc.)

12 week NT scan; I went in there thinking I was just getting extra photos of the baby. I was even discussing with my mom in the lobby how badly I felt for women who came in there and got bad news; how aweful it would be to have to make a heart breaking decision like aborting, or that their child was not alive, etc. Little did I know I was about to become one of those mothers. Baby had a 7.8mm CH from the top of his head down to his tailbone. The doctor told me it was CH, and very coldly wrote it on a peice of paper. He was almost certain it was Turner's Syndrome (when a female is missing one x chromosome) and gave us a very bleak diagnosis. He told me to call my OB/GYN and left.

Testing that was underwent and results.

After talking to the OB, I decided to go forth with testing. I couldn't abort without knowing everything I could, so I got a CVS done a couple days later. We spoke to a genetic specialist too. We were given a 85% chance of a chromosomal problem or heart problem, likely fetal demise, and 15% chance of a normal pregnancy. I was preparing for the worst and trying to emotionally disconnect from the pregnancy.

A few days later, FISH results came back normal. In a week or two after that, full results came back normal and I was having a boy! We did NOT do the micro aray testing as even if the noonan's test came back positive or negative, we were not going to end the pregnancy.

Baby also had suspecious sounds in his heart so we had 2 fetal echocardiograms that came back normal.

Date CH was resolved (if applicable.)

CH resolved mostly at 16 weeks, completely gone by 19 weeks. The doctor stated if he didn't know it was there he wouldn't have ever known.

Due Date

3/28/12

Birth Date - Weight / Length

Desmond Campbell was born on 4/1/12 (we find it appropriate he was born on april fools after the scare he gave us in the beginning).

9lbs2oz at birth

20.75 inches long

Sex of the baby

Boy :) (so much for the turner's diagnosis!)

Complications (Challenges...) after birth if present.

When born, the doctor said he had a murmur they would keep an eye on, but new borns sometimes have a transitional murmur that clears up within a few days. Des' was gone by day two.
Des also has testicles that have not decended, but they are both there and, worse case scenario, he will need them surgically brought down--but this has NOTHING to do with the hygroma and is evidently not that uncommon (edit: both have dropped!)
He had a 8/9 on apgars, which is very good. We will see if anything pops up later but so far he is perfectly normal, perfectly healthy :D


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## Mummy of Ange

I have a similar situation.

I declined all screening early in my pregnancy, didnt give it a second thought. At my 20 week scan i was told the nuchal fold was 7.6mm when the maximum at that gestation was 6mm. I was made an emergency app with a consultant the following day which scared the life out of me. Basically I was told that i had a high chance of having a baby with a chromosome abnormality, e.g. down syndrome.

I declined the amnio as i had previoulsy lost twins at 23 weeks, plus i would keep the baby no matter what.

I spent the rest of my pregnancy a wreck, i was Googling everyday, constantly looking at my scan pics, crying to OH etc, i was a nightmare.

I gave birth on 9th May to my gorgeous little girl who is 100% healthy. That one scan ruined my pregnancy.

xx


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## gigglebox

Mummy of Ange said:


> I have a similar situation.
> 
> I declined all screening early in my pregnancy, didnt give it a second thought. At my 20 week scan i was told the nuchal fold was 7.6mm when the maximum at that gestation was 6mm. I was made an emergency app with a consultant the following day which scared the life out of me. Basically I was told that i had a high chance of having a baby with a chromosome abnormality, e.g. down syndrome.
> 
> I declined the amnio as i had previoulsy lost twins at 23 weeks, plus i would keep the baby no matter what.
> 
> I spent the rest of my pregnancy a wreck, i was Googling everyday, constantly looking at my scan pics, crying to OH etc, i was a nightmare.
> 
> I gave birth on 9th May to my gorgeous little girl who is 100% healthy. That one scan ruined my pregnancy.
> 
> xx

:hugs:


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## collie_crazy

Did they tell you what the measurement was? How it's changed in scans etc?

At my 12 week scan my daughter had a cystic hygroma. Her NT measurement was 11mm. CVS at 13 weeks came back positive for Turner syndrome. By 16 weeks the hygroma had gone to over 40mm and she had Hydrops fetalis all over her body. I delivered her at 17 weeks gestation :(

My story isn't as positive as the other girls. I don't want to scare you of upset you I just thought id let you see my measurements. It's such a scary time and I'm sorry you are having to go through all this worry. I hope your doctors are looking after you I know mine were great with us.


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## prettynpink29

Me :cry: 

Currently deciding on what to do.. I was just told at 10 weeks scan.

This is suppose to be our rainbow baby :cry:


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## gigglebox

do not make any decisions without testing for chromosomal issues first! many women get scared into aborting a child that nothing was wrong with in the first place.

good luck to you dear :hugs: i am SO sorry you are going through this. have you and your significant other done any genetic testing for yourselves?


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## prettynpink29

Thank you :hugs: :hugs: 

And thank you for sharing your story :) 

We are 100% against terminating the pregnancy. So our decisions are soley on the fact do we want to risk miscarriage with doing a CVS or amino. I have stage 4 endo and we have already had previous losses.. So the decision to do something that could cause harm when baby seems totally happy rite now (strong heartbeat and wiggling around :) ) is really hard concept. I think we are leaning towards seeing a specialist and waiting till NT scan and bloods.


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## gigglebox

good luck to you; please also note that many doctors believe that pregnancies that do end in miscarriage after CVS tests may have been ready to end anyway. but i do understand your tough choice, and if it makes no difference because you won't be doing any intervention, i would forgo testing (just my opinion).

I would love to be kept updated, if you don't mind; and plese do persue seeing a specialist. they seem to be much more understanding than regular doctors who give the worst case scenario.

also, i totally feel for you about seeing the baby on the scan and being told it's unhealthy. when we were told that, Des was up there wiggling around like crazy and seemingly totally normal, other than the excess NT measurement. it's a REALLY hard diagnosis to get and i really hope everything turns out perfect for you, as it did for us :hugs: you have every reason to hope.

good luck to you!


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## Beaglemama

I know it's been awhile since anyone posted to this thread, but I would love some support as I am going through the same thing. 2 weeks ago, at 16 weeks, our little girl was diagnosed with a "medium sized" septated CH and very mild hydrops in her chest - the Dr barely could detect it. Ever since it has been a horrible roller coaster of emotions! We too were given the 50/50 could be chromosomal or not and are currently waiting on sequenom results - should be any day now. But either way, I am just so anxious to know how she's doing. We have an echo tentatively scheduled for late August, though our dr's aren't sure she'll make it til then. :( 

Everyday I want to enjoy having her here, but also my heart is breaking. :( I hope evrything has worked out for you ladies.


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## Emerald87

Hi Beagle and welcome. I am so sorry to hear of your situation :(

Gigglebox only occasionally stalks BnB these days but I will try to get a hold of her to come here to give you some support.
Her LO turned out just fine and he's a strong, gorgeous baby now.

Feel free to contact me whenever you need to vent or need some support. I have not been through it myself but if you just need someone, anyone, there for you, I'm always around :hugs:


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## Kpj1990

Hi. At my 12 week scan we had the news baby had fluid around neck 3.8mm, we opted for a cvs. Test came back normal. Todayi went back to see consultant, the fluid has reduced in size a little, have bin booked in for heart echo in August. In my notes my consultant has now started calling the fluid (cystic hygromas) our consultant has told u we are not out of the dark yet, next Mir stone is the heart echo.....


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## gigglebox

Hi ladies! It is really hard to find others on here that have rode this ride all the way through, but I am one of them. The test for chromosomal abnormalities is the biggest hurdle, so chances of a favorable outcome are much better if that test is normal. 

kpj--I have seen SEVERAL stories exactly like yours (my own was just like this, except his measurement was larger than the one you describe) and the babies in those situations have been born perfectly normal and healthy. 

beaglemomma--many babies that are going to pass away due to this condition usually do so earlier than 16 weeks (from what i've been told and have read). It sounds like you have only been newly diagnosed, so you have a little ways to go before being out of the woods, but you have every reason to hope for a good outcome.

Remember ladies, doctors MUST give you the worst case scenario to prepare you in case it happens. It does NOT mean that will be what happens to you. Stay optimistic and remember you have every reason to hope.


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## Beaglemama

kpj - I understand how you are feeling and I hope your echo goes well! Ours will be scheduled in August as well. You'll be in my thoughts, please keep in touch!

Gigglebox - thank you so much for your support. I know what you mean, if she does have Turner syndrome (which is what the Dr's are leaning toward) they frequently don't survive this long. And I know she is ok right now, I can feel little movements, and despite my being stressed and losing a little weight, my belly is still stretching and growing. If it weren't for finding a CH on the u/s it looks like I'm having a completely normal pregnancy! But this waiting is wearing me out. I was glued to my phone all day, hoping to get a call from our genetic counselor with our test results (they tested to rule out DS and Trisomy 13 & 18) but no news today. Hopefully very soon - Thursday is 2 weeks.

Tomorrow my husband and I go to the Dr for another heartbeat check... at least then we'll know for sure if her heart is still going strong. I'll let you know how it goes.


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## gigglebox

please do keep me posted. I would love to hear updates. 

If you click the link in my signature, you will be taken to my own post that follows my pregnancy from when i found out about the CH until now. They told me turner's too, but obviously that was wrong. Then they said maybe it was noonan's (i never got him tested for that because at that point i didn't care if he had it, plus testing isn't always acurrate for that). then they said well maybe it was a heart condition. and then later it was that everything looked ok, but the fluid level was high. i was nervous for every ultrasound because it seemed every time i went, i came back with a new concern.

fortunately in the end he is a perfect little boy :) i had made the decision early to end the pregnancy if they found something terribly wrong, and i was so prepared to get bad news that i was blown away when the tests were all normal. at that point i decided to leave it in nature's hands and just see what happened. things got progressively better...and after a few detailed anomoly ultrasounds and 2 fetal echocardiograms, we were given the "all clear". i didn't stop worrying until he was born though. but now he's here and happy and healthy! and growing like crazy!


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## Beaglemama

No real updates - we are still waiting for the test results for T21, T18 & T13 - hopefully we'll get the call today! 

We had a great appt yesterday! I've been posting on this site under the thread "Holding our breath..." since the beginning so feel free to check that out as it has more detail. But yesterday's appt gave me hope, she still has a strong and steady heartbeat of 160bpm. She's active (moving non-stop through the appt!) and she even got hiccups while we were listening to her! It made me cry :) It's so hard to think there could be something really wrong?

Ladies I hope everyone is doing well this morning. All we can do at this point is take it one day, one test at a time. Let's all hope for the best. :)


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## gigglebox

That is a great way to look at it! I have a good feeling about your situation. Did you get results today? Did they say anything about the size of the CH and if it's shrinking?


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## Beaglemama

Good news! Our test results came back NEGATIVE for Downs, T18 & T13. Getting that call was like having a massive weight taken off my shoulders! I hung up the phone and just cried, we are very grateful for some good news. My husband and I are much more hopeful for a happy outcome now! Of course, we know she could still have Turner syndrome - but that's Ok, in fact, that's fine with us! As long as she can survive the pregnancy (and so far her heart is strong and steady) she will have a happy, healthy life. And God knows she will be sooooo loved!!

Our next appt is Aug 6th (another heartbeat check) and then, like you KPJ, we will have an echo done sometime in August. I need to call and schedule it now - though I have been putting off calling just because I've been enjoying the relief that follows good news. I almost hate to call a Dr, I'm afraid of what they might say! But we are very hopeful to get more good news. I know, ultimately, it's out of our hands. But I'll do everything I can to give our little girl a fighting chance. :)

Please keep in touch everyone! I hope the best for all of us!


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## Emerald87

That's great to hear!! I'm really happy for you!! :hugs:


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## gigglebox

YAY! that is GREAT! i bet you everything is going to be FINE. 

damn doctors...they really need to do as much research on this diagnosis as those of us have. there are so many good outcomes.


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## Emerald87

Yeh Giggles - stupid doctors ;)


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## collie_crazy

I'm so glad your results came back clear! Just wondering why they tested for t13, 18 & 21 but not Turner syndrome?


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## Beaglemama

Boy are you right about doctors! I seriously believe I have done enough research on CH's to give a lecture on the subject now! I know my little girl has an up-hill battle, but why not lay out a little hope for us first? Instead of immediately suggesting termination! If she has a chance, even if it's a small one, I will do everything in my power to help her along! :)

Collie - I see on your profile that you've lost a little girl to Turners, I'm so sorry. My husband and I have chosen not to test for Turners for a few reasons. For one, this is an unplanned pregnancy, and as such, we have no maternity insurance. So to test for Turners, we would have had to do an amnio, and quite honestly, it was just too expensive. The blood test we had done for T21,T18 & T13 was a tenth of the cost, and just as accurate. We were more interested in being able to either rule out some serious problems (so as to put our minds at ease) or to give us enough time to prepare if the results were not what we hoped for. Also, no matter what the results are or would have been, termination wasn't an option for us. So to have the amnio would have been just for our information, and we felt it wasn't worth the risk, or the cost. If she does have Turners, and she survives the pregnancy, we know she'll be ok. Even if she has a few health problems, we can deal with those when the time comes. And we can always have her tested after she's born. 

But hopefully, we are praying and feel optimistic that she'll be ok. We are almost at 20 weeks, and so far she's strong and doing well. Aug 6th is our next heartbeat check, and hopefully we'll get more good news. :)


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