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

[Megan0701]

I'm so glad there's a strong heart in there!! Hearing that does wonders for a worried mommy's heart :) Your appt with the specialist is on the 1st right? You will certainly be in my thoughts! Keep me posted!!

xoxo
Megan

[believe607]

i'd love to join your face book but i don't have one. :( so we'll  just keep touch this way if you don't mind.
i went to my ob yesterday and heard the heartbeat. he said its good and strong. my 3 year old got to hear it! she was sooooo excited. Thank God it sounds strong! i'm considering looking for a doppler. i know i could buy one too. i'm gonna start looking. o, i did read that you got one when you were pregnant! thats where i got the idea!
i love reading the happy stories on here. it lifts your spirits when your feeling hopeless. i tell all my friends and loved ones to google threads like these instead of googling "cystic hygroma." its a blessing. thank you megan for keeping in touch on here. your and inspiration!!!
-Becky

[Megan0701]

Did you read on here that I rented a doppler? Not gonna lie....I did get that sinking feeling in the pit of my stomach if it took a minute to find her heartbeat. But I'm telling you, that is the ONLY thing that got me through the last half of my pregnancy. After her CH went away, her amnio and echo came back normal, I was still worried about her. I literally laid in bed every night for at least an hour and listened to her heartbeat. I couldn't go to sleep without it. With that said....there is always that chance that that fear of not finding it could come true. One of the girls on here, I believe her screen name was 'anca' rented a fetal doppler on my advice. Her and I became close and she would send me text messages with updates on her precious girl. One day I got a text from her that was slightly panicked. She said Alyviah's heart rate was very slow. Very slow. I told her to get to her doctor's office right away. She was far enough along that they very well may have delivered her daughter (she would have been extraordinarily premature though). Unfortunately by the time she was able to be examined, Alyviah had passed. But I feel like at least she was able to make a last ditch effort to save her little girl. I don't know....it's definitely a personal choice that's dependent on how you, as an individual, deal with these types of things. On a positive note, Bianca just gave birth to a perfectly healthy, beautiful baby girl in November :) I'm rambling! I'm sorry :) I just have WAY too much to say about this condition! This is my outlet. If you need to talk, I'm always here...not to sound cliche, but it's true. You can always come find me on FB too if you'd like. I've got several girls from this thread on my list as well as other mom's raising children who were born WITH their CH :) It's a little lymphatic malformation community. My name is Megan Carwin....I think I'm the only one on there!

[believe607]

hello again.i also thought hydrops was 100% fatal until i saw some you tube videos. there is the sweetest little boy on there named kayden.
we're of course praying for the best outcome, but are ready for the worst. we're not terminating no matter what.
i hear you about wanting an ultrasound everyday. i've been considering renting one of those dopplers to hear the heart beat, but am afraid one day i won't find it. that would be awful.
i'm so glad you checked this site. it does mean alot to have someone to talk to.

[Megan0701]

Yes Yes Yes. The research that you can find on the internet is in desperate need of an update. Some of the studies I have read were done upwards of 15 years ago. Since I have started posting on this thread, I am CONVINCED that the statistics are incorrect. I've even talked to a woman whose baby had HYDROPS and survived. Unreal. I read over and over again that hydrops were 100% fatal. As for ultrasounds, I only had them when I went to the specialist. Obviously my OB did one when he diagnosed the CH, and then one when I was in my 8th month because my specialist had detected polyhydromnios. With the peri, I had an u/s at 15 weeks, then again at 16 weeks when I had my amnio. Then another when I had the fetal echo done at 22 weeks....then at 26 or 28 weeks....and then another at 31 or 32 weeks. It's all becoming a little fuzzy for me now. Of course if it had been up to me I would have had an u/s every day! And yes, my specialist recommended termination at my first visit. My OB didn't...but that may have had something to do with the fact that he is a friend of the family (I lucked out with that). But once I told my peri that termination would not even be considered until we knew EXACTLY what we were dealing with, he backed off. From there on, my daughter's condition improved, so there was no need to discuss it any further. You just stand your ground and everything will be okay. I certainly hope you get good news next week...and I'll be crossing my fingers for normal amnio results. Please keep me posted! I keep this window open all the time on my computer now so that I don't miss another post :)

xoxo
Megan

[believe607]

Yay! i was so glad to see your post! i started bloging on another thread that was very active, but no one posted after me for days! i started to feel like i was cursed!! haha!
n-e-ways. i did alot more research about rh incompatibility.
my 3 year old is from my first marriage. my x husband was o+ so i had to get the shot with her and a misscarriage before her. my current husband is a- so i don't need the shot. i just thought it was very interesting that ch was mentioned in rh incompatibility. i think alot more reasearch should be done. along with ch!
man! the research on ch is horrible. they need to study more about the outcomes. blogs like this proves its not all doom. research is so negative. my ob and specialist suggested terminating right of the bat. sad. really puts your hopes up. i started reasearching right away of course, and was so scared until i found this thread. what a blessing.
well. i have a regular ob visit tomorrow. i asked him if he's going to do an ultrasound and he said no. how often did you have ultrasounds done? and shouldnt they refer you to a high risk doctor? i really was wanting another ultrasound. but i see the speacialist next week anyway.