Miscarriage/Pregnancy Loss



I wanted to respond to your post and really wanted to make sure you saw this.

I am currently carrying a baby who had a cystic hygroma (nuchal fold measuring almost 9 mm!)discovered around 12 weeks, had a CVS, and the karyotype was perfectly normal.

Granted, Isaac has numerous anomalies, and he is not supposed to make it.

BUT, I will tell you this... the cystic hygroma is gone. His heart is perfect. His brain is perfect. His anomalies all stem from an omphalocele (abdominal hernia) which caused a whole chain reaction of other issues.

Like I said, though, the cystic hygroma is gone, his heart is perfect, he never developed hydrops or anything, etc.

Here's a link to a blog to a friend of mine whose baby was also diagnosed with a cystic hygroma. He was born about 5 weeks ago and is a perfectly healthy baby. https://doubelieveinmiracles.blogspot.com

I also recommend checking out www.benotafraid.net There are lots of stories on there of parents whose children were diagnosed with a cystic hygroma and are fine.

A cystic hygroma can sometimes have an associated heart defect, but the percentages we were given were less than 50%. Also, many, many congenital heart defects can be treated.

I am sure they haven't sent you for a fetal echocardiogram yet because you're still early and they wouldn't be able to see much. I am assuming they will though.

I just wanted to encourage you that a cystic hygroma is not a death sentence for your baby. Quite the contrary. Doctors will often present this in a very grim way, suggest termination, etc. But please know there is HOPE... both from a medical standpoint (trust me, we did a ton of research on this, met with genetic counselors numerous times...), and from a faith standpoint as well.

Please, please, please e-mail me any time. I woudl love to connect with you and encourage you in this. My e-mail is coolteacher79 at yahoo.com  

Re: ***MARGARITA77***

  • Also, as far as things for the hospital, etc...

    There is an organization called Now I Lay Me Down To Sleep (google it for the URL). Basically, it's a group of professional photographers all over the nation who will come and do rememberance photography free of charge.

    We also have hand/foot print kits, casting kits to do hand and foot molds, and we bought a bunch of Christmas balls and paint to put Isaac's hand and foot prints on the balls as keepsake ornaments for ourselves, our parents, and our sibblings. We also have a special outfit, a blanket, etc.

    I hope you don't even need this information, but I wanted to address these concerns for you as well.

    Again, please, please feel free to e-mail me any time. Seriously. I would love nothing more than to allow our situation to somehow be able to provide comfort and hope for someone else.

This discussion has been closed.
Choose Another Board
Search Boards