cystic hygroma

[safia]

hi this is about my sister in law she has been diagnosed with a cystic hygroma and has an amnio that has returned negative so it is not chromosonal, she has another appointment 04 13 i just wondered if anyone else has experienced this?    any reply will be gratefully received  thanks safia

[AmandaMarie803]

had my 20 week ultrasound yesterday...the sono tech told me it all looks good!!! he said it was one of the best looking hearts he had seen all day...he showed me all 4 chambers several times and he said he could see the septum that divides the chambers and was even able to see the aorta which usually isnt visible until 25 weeks...that the spine was spectacular...he said the anatomy was remarkable and if i didnt believe him he would show me pics of another 20 week ultrasound for me to compare for myself lol...no fluid in the neck...i asked at the end again about the hygroma and he said "did u see it?" i said no but i dont kno what im looking for..he showed me his printout of the back of the babys neck and said see no cysts!!..he also told me that im paranoid..bc i was basically holding my breath the entire time asking if each thing he looked at was ok...i have plenty of amniotic fluid and my placenta looks perfect..i told him he is my new best friend..when i had my dr visit he told me i should still consider the amnio just bc of my history, and the 1st trimester screening i could be that 1 in 7..i would really prefer to not do the amnio just bc of the risk of miscarriage..i really dont wanna tempt fate.and my husband and i both feel that we can handle whatever we are given..seeing as all the anatomy is good this time we kno that if something is wrong it wont b as severe as all of the complications we had last pregnancy...still kinda paranoid but feeling much more relaxed than i have been :)
_Amanda

[DayMay0923]

I talked to the genetic counselor I ended up seeing, and she said that these two aren't related and my doctor must just be throwing things in the air now... and that the only SB usually not detected by U/S is tiny pin hole size lesions.. I am just going to relax. We go back to the peri next month for another anatomy scan and every month there after. My echo is Thursday the 6th, and I am keeping my fingers crossed that it comes back good, since the two level II scans of the heart have:-D Thank you for replying, and I will keep in touch.

[Megan0701]

I hope someone else has more insight than I do. I was never told anything about neural tube defects. Aren't most neural tube defects detectable via ultrasound? I know spina bifida is. And I would think that anecephaly would be detectable as well seeing as the brain doesn't form when that is present. I did a little research after I saw this post and I haven't come across anything yet that relates these defects to CH. The closest thing I found was hydrocephalus forming, but that is cerebralspinal fluid that accumulates in the brain, not fluid from the lymphatic system. I'll keep looking for more info. Is that all he said about it? I mean, did he not get into specifics? One would think that if a doctor was going to present such a grim possibility (not that all neural tube defects are as grim as others) that he would elaborate a little more. Hopefully someone on here has a more knowledge on the subject than I do. I'll keep looking though!

[DayMay0923]

I just wanted to know if any of you ladies who have or are going through this had ever been told that this could be a sign of a neural tube defect? Just as everything starts getting better, my regular doctor brings this up (although U/S was good except a thicker neck/extra skin). I just can't be stress free for long. Help anyone? Thank you.

[Megan0701]

Oh my gosh....how incredibly frustrating!!!!! With everything going on, insurance technicalities should not be something you need to worry about. Wow. I would have lost my cool. I definitely agree, find a new doctor. There is absolutely NO reason for anyone to be so cold and insensitive. No reason at all. I was so so lucky. My OB is a family friend, so he cared about me and my daughter. He made sure that I saw the best peri in the area. My peri was definitely a little more harsh than my OB, but he had to be. He "recommended" termination at my first visit, but when I told him that termination was not an option at that point, he left it alone and never brought it up again. The way I see it, they can do their job, give you accurate information, and still have a little tact while doing it. You NEED to be 100% comfortable and confident with the care you and your child are receiving. This kind of thing makes me furious. It reminds me of Bianca. She posted on here awhile back and has since become a very dear friend of mine. But the way she was treated by medical professionals had me 2 seconds away from getting on a plane to Ohio. I am so sorry you're having to deal with this....on top of everything else. It's ridiculous. I suppose May 6th isn't very far away, and you're right, you probably wouldn't be able to get an appt for an amnio before then anyway. I understand that it might seem pointless to get an amnio even though you've decided not to terminate, but for me it was more about preparation than anything else. Financial preparation as well as emotional preparation if indeed my daughter would be born with special needs.
Thank you so much for taking the time to update. I wonder about you and that babe every day. I'll be anxiously awaiting the 6th and crossing my fingers for good news!!! Take care momma!

[AmandaMarie803]

what an ordeal..met with genetic counselor she was very nice...when they finally call me in to meet with doc they tell me theres a problem with my insurance..i had gone down to the insurance office to straighten this problem out 2 weeks ago..they are telling me my insurance is coming up as inactive..mind you the reason they cancelled my insurance is because of a mistake on THEIR END!!!!...so i walk into the exam room and the 1st thing the doc says to me is "Amanda you have no insurance!!"...i explain how i went n straightened it out n they assured me i was still able to see doctor...so he goes "ok well anyway u kno this is a VERY ABNORMAL pregnancy dont u? like u kno its going to be turners again right? and before u even think about trying again u HAVE TO be genetically tested"...so im sitting there and i said "i was led to believe last pregnancy and from everything i read online (and the genetic counselor had also told me minutes before) that Turners syndrome happens sporadically and doesnt really carry a recurrence risk"...to which he replies "yea well im telling you its going to be turners" and then he tells me how hell do the amnio if im willing to pay the thousands of dollars that its going to cost. They didnt want to listen to me as i explained that medicaid will pay for any bill incurred within the 30 days before ur insurance becomes active. I called the insurance company right after i left to let them kno that now they are really interfering with my medical care as i am a high risk pregnancy and really do need to have the amnio. They told me that because i am pregnant it only takes 30 days to activate the insurance instead of the usual 45. My mother told me she also had heard that medicaid covers 30 days prior to it becoming active. she told me to get online and look it up because if i have it black in white in front of me how are they going to argue with that? i came home and looked it up. not only am i entitled to prenatal care as well as specialists while i wait for the insurance to become active, medicaid has retroactive coverage for 90!!! days before it becomes active...and the doctors office has to kno this..they just wanted me to come out of pocket for thousands of dollars..they rescheduled my appt for the amnio for next monday..im calling them tomorrow to let them kno what i found out from medicaid and inform them how i have the printouts stating what i just said from not only medicaid but from the new york state dept of health!! id like to see them argue with that!!..my husband does not want to go back to that doc because he seemed like he only cared about the $$ and because he was just so insensitive...he hadnt done the sono so how would he be able to say its just as bad as the last pregnancy?!...last pregnancy almost every organ had something wrong with it..all the sonos i have had so far this pregnancy state that the anatomy they can see all looks normal...my husband wants me to call the peri that my OB originally recommended..when i had first called 2 weeks ago they were on vacation and by the time they called me back i had already given in and called this doc and tehy were going to give me an appt for today as well so i figured i was better off just leaving the appt i already had...so now if i call YET ANOTHER DOC tomorrow im going to have to explain the insurance situation and how although the doc did reschedule the amnio i would really prefer to not go back there seeing as he was just so cold and rude(not as horrible as the peri from the last pregnancy but come on! cant i just get a nice doctor for once?)...i wanted to scream...i really felt forced into having to terminate last pregnancy and this time i WILL NOT even consider it...i feel the baby move all the time every day and theres just no way i could do it..not to mention i still feel a lot of guilt over the last pregnancy even though the situation was really out of control, it was putting My life on the line..also compared to the size of the hygroma in the last pregnancy (12mm compared to 4.3mm this time) i really dont see how it could be something fatal thats wrong..and if god forbid it did turn out to be something fatal, whats gonna happen is gonna happen, why would i terminate? it would all happen in its own time...so its making me wonder if i should just wait until after i have the level 2 sono to have the amnio..my level 2 is scheduled for next thurs may 6th..if i have to call a new doc to schedule an amnio i assume i wouldnt be able to get an appt before then anyway...my husband feels if im not going to terminate why even bother to put myself thru the pain of the amnio again..he even joked that if when they do the sono before the amnio, if it all looked good he was going to throw me over his shoulder and run away with me...i was so prepared to do the amnio but the insensitive doc and the insurance issue and now the waiting yet again is really startin to shake my resolve..and my confidence...i really felt it was all gonna be ok..it couldnt be anywhere near as bad as last time but all these so called experts are trying to tell me im wrong! i really dont get it...i just want SOMEONE to have SOMETHING positive to say...they are really sucking all the enjoyment out of my pregnancy...and what i really didnt like was when he said "before u even think of trying again..."......try again?? im still pregnant now u jerk!!!!...i really have had it with doctors..we go to them when we are going thru such a difficult period and they cant even manage a kind word...i plan on spending the day tomorrow on the phone..first with 311 (ny state helpline) to file a complaint about the medicaid office, then to the doc i saw today to explain what i found out (even though im sure they already knew medicaids policies seeing as they deal with insurance more often than i do) and then to yet another perinatologist to see when they can see me..no sense in stressing..juss gon do wat i gotta do and hope that the 3rd times the charm wit these doctors...thanks for listening
-Amanda