Fetal Cystic Hygromas

[becoming]

I just want to post our story here in case any moms-to-be are searching for answers/hope regarding this condition. When my son was diagnosed with cystic hygromas in utero, there was no positive literature online regarding the condition whatsoever. I waded through pages and pages of information basically telling me my son had a very small chance of even making it to term and an even smaller chance of being a normal, healthy child. He is a completely healthy, amazing 2-year-old now, and I wrote out our story to give hope to other parents with this devastating diagnosis. I hope this helps someone.

Our Story

[at_the_hip]

Amazing story, Mama! What a sweet little miracle you have.

[MyFour]

Great story and how thoughtful of you to share it for others that may be dealing with the same thing.

[naturalmomma1]

Thanks for sharing your story. I was really interested in it because my youngest daughter has microcystic lymphatic malformation (also called cystic hygroma, though I think that may be if it's macrocystic). I remember being sent several places for ultrasounds and finally a fetal MRI before they could figure out what it was. Thankfully for us it's in a less common place for it to be...her left leg around the knee area. I remember bawling in the MRI; the uncertainty is horrible. She still has it; it'll always be there because during the surgery she had at 4 months they found that it's too involved in the dermis (and muscle too I think) to completely remove it, and actually the surgery made it worse. But, she is soooo much better off than most of the children who have this, as is it more common to be found in the head and neck area. She walks just fine and it's more of a cosmetic issue than anything at this point..and hopefully will stay that way! Oh, and they never felt that it had anything to do with one of the genetic syndromes...sometimes these things happen and they're not sure why yet. I'm so glad things turned out well for you and your little boy!

[RedOakMomma]

Well done, mama.

[littlecityfarmer]

I know you posted this awhile ago, but I just read your blog post about your experience, and it made me feel a little brighter. My baby, 13 weeks along, has a very large cystic hygroma, and I'm waiting for FISH results to come back with the karotype. Everything I've read in the past few days, other than your piece, has been so grim and non-reassuring, but I feel like I can grasp a tiny shred of hope, now that I know that others have had similar diagnoses and great outcomes :) Thank you so very, very much!