Miscarriage/Pregnancy Loss
***MARGARITA77***
Hi,
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
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
This discussion has been closed.
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.