Cystic Hygroma (large NT@12 weeks)--not a good scan--Updated :)

[gigglebox]

Hi ladies; as always, I hope you all are doing well!

I had my scan today...by LMP I'm 11+6. Not good...I got diagnosed (well, Bun did) with cystic hygroma. I know very little about it; have a genetic test (CVS) and a meeting with a counselor tomorrow...in the meantime I'm trying to find out, have any of you had any experience with this diagnosis?

The doctor who reviewed my scan made things look very bleak needless to say I'm very upset. He essentially wrote it down on a sticky note, told me to look it up, said he was very sorry and left the room.

I didn't even ask for my measurement as I think i'm emotionally trying to detach from Bun to face the hardest decision I am afraid I'll have to make...heartbeat was 173...I didn't even ask for the disc of images as I just wanted to get out of the office.

Any info, good or bad, would be appreciated.

Thank you all!

 

[amore]

sorry hun I have never heard of it but did not want to r&r. I hope everything will turn out ok. Big hugs xx

 

[d1kt8r]

this might help im sorry about your news hun..
https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001203/

 

[gigglebox]

thanks so much; I had seen that already but i'm trying to stay off of "googling" too much but would love personal experiences...hence coming to b&b everyone here is amazing!

 

[wavescrash]

Googled and found some scary info but I did find some good personal stories.

"hi ladies i really hope that this helps. i was told my baby had a cystic hygroma and it measured 5ml at my 11 week scan then at my 16 week scan the fluid had decreased to 4.1ml but at my 22 week scan i was told the fluid increased to 7ml. at all of these scans i was offered a termination but we refused point blank ase wanted our baby no matter what how he looked or even what could be wrong with him, i was offered all the tests going but again me and my partner refused all of them we were prepared for anything that was thrown at us. we had regular growth scans every 4 weeks and i felt alot of hope as my partners dad past away and my partners nieces went to see a spiritualist and peters dad came through and sed that every thing was going to be ok and the name we picked was just perfect so from then on it didnt bother us until the night b4 i gave birth my mum told me my sister had sed 'what if he does come out with downs' then it got me thinking and a little upset, then i gave birth on january 27th 2011 @ 4.33pm and he was perfect in everyway possible. so ladies dont give up hope if the fluid measures 6-7ml or less take a chance i did and it worked my way. if its more have tests done but they may come back normal. but in some cases they dont as u have read on here already."

 

[wavescrash]

More... the last one being my favorite.


"My son was diagnosed with cystic hygroma at 10 1/2 weeks gestation when the doctor couldn't find his heartbeat and sent me for an ultrasound. We were devastated and went for genetic counseling and scheduled an ultrasound at 15 & 18 wks. The doctors couldn't explain why this had occured only if the baby was a girl there would be a 1% chance of survival. We were very excited and hopeful to discover @ 15wks it was a boy! However by 15 wks. gestation the hygroma had moved to the sides of his neck (I'm sorry I don't remember the sizes). We didn't know what this meant but at the 18 wk. ultrasound the hygromas were gone. We never had genetic testing done & still haven't. (We didn't want to risk the baby's health with an amniocentesis because regardless we were going to follow the pregnancy through to the end). I am writing this to try and give some mothers hope. My son is now a healthy and normal 6 year old boy. This can be a very devastating diagnosis without always having an answer for why it happens, but there is and can be hope."

"I have a happy ending too! Our son was diagnosed with a CH (4.3mm down his neck and spine)at our 12 week scan. From what we were told we thought it was a definite he would either have a chromosome disorder or a heart defect, we were devastated. We opted for the CVS which came back totally clear. We then had cardiac scans at 16 weeks (we were told the CH had gone then) 28 weeks and 34 weeks. Everything was fine. I had an elective section but that was nothing to do with the CH. We now have the sweetest 9 month old baby boy, with absolutely nothing wrong with him!"

"My son was diagnosed with a cystic hygroma at 13 weeks....what this article doesn't say is that in 50% of the cases, the hygroma will spontaneously resolve by 18-20 weeks, with no lingering side effects. There are more being detected now because of the frequency of the early ultrasound. My son was in the lucky 50%--at our 20 week ultrasound, his hygroma had completely resolved (and his was large, at 3.5 mm, from the base of his head down to his tailbone). His heart was completely without defects. He was born perfect...no problems whatsoever. And I don't have to worry about any chromosomal defects that have yet to show up as we did the kerotyping and he was also fine (via transabdominal CVS--my placenta had moved and they couldn't do it transvaginally). Believe me...I am grateful. Every time I see those words, 'cystic hygroma' I want to cry...it was terribly scarey but, if you are reading this, please know that some of us come out on the other end, completely intact and fully functioning...with a normal neck."

 

[gigglebox]

Thank you very much. It was so weird, Bun was measuring well as far as we could tell (didn't get an official measure but saw at least 11 weeks on the screen), and his/her heart beat was perfectly at a rhythm of 173bmp...no skips or anything...the fetus just seemed so...normal! healthy and strong even! moving and grooving...and to think our little bun is messed up in some way is just so devastating, especially when it looked so normal.

*sigh* I hate waiting. This makes the 2ww feel like a piece of cake...I just hope I don't have to go through THAT again any time soon! what a week.

 

[sjwebb]

I had a friend who was not so lucky. The dr told her that the skin on the back of the neck would decrease though, which is good! She had to have an amnio done to test for chromosomal problems and her water ended up breaking the next morning at 15 weeks. I so HOPE AND PRAY this will not be the case for you, whatever you do, please do not terminate the pregnancy, drs are wrong all the time. If your body decides that baby can't make it then let your body decide, not these drs.

 

[steph.]

There was a lady on here a couple of months ago who was diagnosed with the same thing. I think she posted a thread about it in the gestational complications forum.
All the stories above are very reassuring so dont give up on your baby! I am so sorry you are going through this at the moment, the not knowing must be terrible My thoughts are with you

 

[KendraNoell]

I can't believe the Dr made it sound so horrible... from what I am reading the prognosis can be very good if they can remove the cyst... I don't understand why he would have given up before you could really know for sure what is going on? You have a lot of time for that bean to cook and grow and you could be one of the lucky ones, even if you aren't, it doesn't seem like its debilitating at all, I would say don't give up and I will be praying for you!

 

[gigglebox]

thank you so much everyone testing for chromosomal defects this morning; should have results by Friday. hopefully I am one of the lucky ones and everything resolves fine...if not, we have some very big decisions to make.

You all are amazing and I would be so much worse off without this forum. Thank you all.

 

[keepontrying]

I manage a children nursery and have experience of a child coming into our care with this condition - he was completely able bodied, on target and ahead in some areas developmentally. He was under 1 when he started nursery- the lump on his neck was noticeable and his head tilted slightly... the time came for the op to remove and all that was left was a very small scar.

I dont think this is a damning as the dr implied..... xxx keep your chin up and good luck hun xxx

 

[gigglebox]

thank you everyone--I wish i had a positive update but I don't. Sadly the fluid is not just on baby's neck, it's around the entire body. I don't think i'll be one of the lucky ones, but we will see. The doctor gave me about a 15% chance of this turning into a normal and healthy pregnancy, but that was before he discovered the fluid covering the whole body.

keepontrying--thank you so much for the personal story.

I'll keep this thread updated in case it will help anyone.

 

[gigglebox]

thank you everyone--I wish i had a positive update but I don't. Sadly the fluid is not just on baby's neck, it's around the entire body. I don't think i'll be one of the lucky ones, but we will see. The doctor gave me about a 15% chance of this turning into a normal and healthy pregnancy, but that was before he discovered the fluid covering the whole body.

keepontrying--thank you so much for the personal story.

I'll keep this thread updated in case it will help anyone.

 

[KendraNoell]

I will keep praying that that's not the case for you.. I don't understand how fluid all around the body is the same thing though

 

[wavescrash]

Oh wow, I'm sorry to hear that I hope that somehow he's wrong or things take a turn for the better. What do you plan on doing?

 

[gigglebox]

Oh wow, I'm sorry to hear that I hope that somehow he's wrong or things take a turn for the better. What do you plan on doing?

Not sure yet, it really depends on the diagnosis.

 

[wavescrash]

Well I'll say some prayers for you and your little one. I hope it all works out for the best.

 

[jennijunni]

I am so sorry!!! Lots of hugs, and prayers!!! I will continue to pray for your sweet baby! Please take care mama!

 

[gigglebox]

thanks so much everyone; your support, thoughts, and prayers are greatly appreciated.

I am still waiting for the results, but in the meantime my husband and I have kind of resigned to the fact that the worse case scenario is also the most likely (that being a chromosomal abnormality, in which case the pregnancy will either have to be ended or will end on it's own--otherwise a severe disability is eminent). I am heart broken but OK, considering.

I had started to be somewhat OK with talking about it, too (not giving details, but letting some close coworkers know things weren't going well), and I managed to only cry a little bit today at work, and then pull myself together quickly...

...Until I got home from work. I just had one of the most surreal experience of my life.

When I got to my street, a young boy (about 8 or 9, blond hair, red shirt, and carrying a red plastic toy light saber) jumped into the road and started chasing my car up the street. He ran after my car and when I pulled into my driveway and parked, he was approaching my yard.

I stepped out of the car and closed the door. "HI!" He said, so I said hello back. The first thing he asks me: "Do you have any kids?" and it took all my strength not to cry. I said no. He asked, "Are you going to have any kids?" By this point, I realize that this boy seems to have some sort of mental difficulty. I am just so taken aback and baffled by his questions. I told him that hopefully I will have kids someday. He stood at the end of my driveway and started rambling about if I was to have kids...I couldn't understand a lot of what he was saying; all I did hear was his advice to let my kids talk to people. He also told me he likes to talk to people to let them know about him. He seemed to be completely aware that he was a child with special needs. He started walking away, said something else I couldn't understand and then said "Bye!" --I could hear his parents whistling for him down the street. I told him it was nice to talk to him, and to take care.

I went inside my house and just bawled. I am still crying about an hour later. That was just so intense...the whole situation; the fact that the kid was special needs (as they suspect my fetus would be should it even be able to survive--though much worse, i'm sure), how blunt and relevant his questions were...

Just so surreal. Surreal and amazing at the same time. It is painful but it also feels really good to cry.

I just want this nightmare to be over.