pregnant-questions about cystic hygroma

[momma2b]

Hi I am 19 almost 20 years old and about a month and a half ago I found out that I am pregnant for the first time. Then a few days ago an ultrasound confirmed that I was pregnant with identical twins and that i am about 11 weeks along. Unfortunantly, on one of the babies (BABY B) they found an abnormal mass on the back of its neck and head. The other baby is perfectly fine and absolutly normal. The doctor wont make an actual diagnosis until i meet with a specialist. But she did say that it could and most likely be cystic hygroma. I have reasearched it on the internet and found alot of scary things about it. Now I am absolutly terrified about what is going to happen to one of my babies. Does anyone know any good things about cystic hygroma?? Am I going to have terminate that baby?, and if so will i have to terminate both or could the healthy one still survive? They share the same placenta but are in different sacs. My husband and I are so scared please any help will be greatly appriated.

[Angie718]

I wanted to offer some HOPE, so here's my story. At 12 weeks a septated cystic hygroma was discovered on my baby during my ultrasound (3.5mm I believe). The genetic counselor spoke in great length with us and gave us all the stats,etc and we were devastated. Basically we had a one in six chance of a completely healthy baby. Two CVS's were attempted but couldn't be done so we had to wait until 4 weeks after we found out the bad news to have the amnio. That month waiting was the worst in my life. They then discovered that the hygroma had disappeared and amnio results were normal. I had a
fetal echocardiogram and that turned out to be normal too. So I am now at 23 weeks with a healthy baby girl!
Please don't give up, there is hope. Please get a CVS or amnio to get a definite answer before even thinking about termination. Hygromas can resolve, even septated ones like ours and miracles can happen :-)

Angie

[twinsmcdaniel]

hello. i've been reading this topic and I'm glad I found some other mothers out there who are experiencing or having experienced what I am going through.

I am 13 weeks pregnant with twins. They are most likely identical. They are in the same placenta, but in different sacs. I had an ultrasound done at about ten weeks and every thing looked normal (it was done while I was in the ER and you know those ER techs aren't alwasy right on) and every thing was fine. The babies looked healthy and were growing. Less than one week later I had my first visit with the twin specialist and that is when we found fluid behind the neck. he didn't call it anything, he just told me that if it spread to the heart or lungs that baby wouldn't make it to full term but there are some cases when the condition resolves itself. He told me he wanted to see me again in six weeks and that I should think about doing amnios on my twins.

I looked up chromosomal abnormalities and did just a tiny bit of research and read that 90% of babies that present this early in gestation are born fine.

Then my regular ob/gyn mentioned that my baby has Cystic Hygloma. She didn't really explain what it was, we were there for a check up. She just told me to keep my next ultrasound appointment with the specialist and sent me on my way (I am serioulsy considering finding another ob)

This morning I have been researching CH and I am terrified at what I am finding. It is really making me feel so sick. I am trying to stay optimistic and hopeful because we've only seen one ultrasound and no tests have been done yet. I'm trying not to jump to conclusions.

I've decided that if the fluid level is the same or has increased by the time of my next ultrasound (Jan 29th) then I am going to go ahead and have amnios done.

For those of you who have lost your children because of this, my heart goes out to you. I can't imagine and I pray that my children will be okay.

For those of you who have children who have survived against the odds, it is really great to know that you are out there. It gives me hope.

Thank you all for sharing your stories

[HopefulMom2Be514]

Hi! I am 27  years old and have been told for 10 years that i may never conceive due to female problems. To our surprise we are pregnant. My doctor wanted to know exactly how far along I was so he sent me to have a UltraSound done this past Monday. The U/S showed the I was 9 weeks 6 days pregnant. Our baby was so cute it was moving around and it's heart rate was 176. good we thought. The lady doing the ultrasound took so many pictures of it's head I now realize. Our Doctor told us that it looked as though our baby has Cystic Hygroma or and he named a lot of other scary things. He told us that he made a appointment with a specialist fo me  to have a more in depth U/S done this coming Tuesday. Today is Wednesday and all I can do is read and CRY the unknow scares the hell out of me, I research in the morning before work and in the evening after. I want to be educated but it's hard to understad all of these syndromes. I am so overwelhmed and want answers. Until Tuesday I think reading all of your storys is going to educate me and calm a small piece of me knowing that we are not alone. It is so comforting. Thank you all for sharing your personal situations and thanks for listening to ours. I Pray for all of you and your familys.

*MOONLVER*  I do know a few people personally with HYDROCEPHALUS. My best friends son was born with Hydrocephalus without spina bifida He has had 5 surgerys and done well with each one and is now 11 years old and is in a accelerate class he is so smart. 2 of My Other friends each have a son who has both spina bifida and Hydrocephalus  they both are very smart and normal looking except for lower body Paralysis but with surgery and therpy they both have gained some control of their lower body. If you have any questions please ask.


Jamie a Hopeful mom2be

[MOONLVER]

I AM GOING TO 24 YRS OLD. AND THIS WILL BE MY 4TH PREGNACY, BUT ONLY HAVE ONE LIVE CHILD, I AM ABOUT 11 WEEKS ACCORDING TO MY ULTRASOUND. BABY HAS HAD A HEART TONE AND IS MOVING AND EVERYTHING BUT THEY FOUND FLUID IN THE HEAD SO THEY ARE ASSUMIMG THAT I AM GOING TO HAVE A SAB, THEY THINK IT MAY BE A CYSTIC HYDROMA VS HYDROCEPHALUS,BUT THAT IT WAS TOO SOON TO KNOW, AND IT BROKE MY HEART AT FIRST BUT I AM STRONGER NOW. IT STILL A CONSER, BUT I GUESS THERE IS NOTHING TO DO BUT WAIT AND SEE WHAT LIFE BRINGS. I STILL HAVE NO CLUE WHAT THAT IS

[tif1]

One of my dearest friends has a daughter with that. She is 6 now and has a trach and a feeding tube and has had many surgeries but is otherwise normal and happy. A girl in my office had an ultrasound where it showed it and they advised her to terminate which she did.  I do know with my friends daughter everytime they do surgery it grows back but she is seen regularly by a specialist and prognosis is good. Good luck

[webozo]

i am not sure how well things have turned out for you guys but i do have bit of good news for you i have a four year old grandchild that had a massive cystic hygroma. it covered all most his whole head and back. other than a webbed neck larger hand and feet than normall and a slight dvelopmental problem. he is a happy, and  healthy little boy. we did not get answers when my daughter was pregnant and we still don't have answers but he was a blessed gift and we love him dearly. the only thing we are worried about is thia was my daughters firsst child and with no real answers she dosen't know if she should have another child.