Stella Johnson
Active Member
My little sister is 27. She's having her first baby. Right after she found out she was pregnant they found a cystic hygroma which is basicly some type of tumor in the baby's brain that goes down their neck. (I posted about this previously when it happened)
Miraculously it went away on it's own. It dumbfounded the docs. They had never seen it go away. The hygroma is usually a sign of major genetic defects. Deb had genetic testing done and all came back normal. We thought we were in the clear.
She's now 27 wks pregnant. They did another sono today and more bad news. First they noticed the neck is too thick then the doctor looked at it and said there is fluid either on or in the lungs. Not sure which. They said it's a sign of Noonan's syndrome which is a very disfiguring genetic disorder that can cause retardation, serious deformaties, and heart problems.
Her doctor sent her immediately to a perinatologist. They are doing more gentic tests.
They can either try to drain the lungs in utero which may cause her to go into labor and they said that usually the lungs will just fill back up again, or they can go ahead and take the baby. She's so tiny. I'm scared she won't make it. The baby's name is Bailey by the way.
When I was asleep today I heard my phone ringing but didn't feel like getting up to answer it. I had another nerve block for my hand/arm earlier. They gave me demoral and it knocked me flat. My mom called Andrew at work and told him so he rushed home to wake me up.
The perinatologist she saw today wants her to see another perinatologist next week but they are all not working. Wonderful isn't it?
From the way they talked something has to be done soon because the fluid on the baby's lungs is keeping them from developing. I feel so bad for her. Breaks my heart. We've been through so much with my difficult child's medical problems, I was really hoping we would get one healthy baby in the family. Deb is scared to death. I just want the baby to be healthy.
They also want her to go to the hospital and meet the PICU docs so that she's more comfortable with them. The baby will live at the hospital for months if she's born so soon.
The holidays aren't going to be very happy or merry for us this year.
Please pray for my little niece and my sister. We really need it.
Steph
Miraculously it went away on it's own. It dumbfounded the docs. They had never seen it go away. The hygroma is usually a sign of major genetic defects. Deb had genetic testing done and all came back normal. We thought we were in the clear.
She's now 27 wks pregnant. They did another sono today and more bad news. First they noticed the neck is too thick then the doctor looked at it and said there is fluid either on or in the lungs. Not sure which. They said it's a sign of Noonan's syndrome which is a very disfiguring genetic disorder that can cause retardation, serious deformaties, and heart problems.
Her doctor sent her immediately to a perinatologist. They are doing more gentic tests.
They can either try to drain the lungs in utero which may cause her to go into labor and they said that usually the lungs will just fill back up again, or they can go ahead and take the baby. She's so tiny. I'm scared she won't make it. The baby's name is Bailey by the way.
When I was asleep today I heard my phone ringing but didn't feel like getting up to answer it. I had another nerve block for my hand/arm earlier. They gave me demoral and it knocked me flat. My mom called Andrew at work and told him so he rushed home to wake me up.
The perinatologist she saw today wants her to see another perinatologist next week but they are all not working. Wonderful isn't it?
From the way they talked something has to be done soon because the fluid on the baby's lungs is keeping them from developing. I feel so bad for her. Breaks my heart. We've been through so much with my difficult child's medical problems, I was really hoping we would get one healthy baby in the family. Deb is scared to death. I just want the baby to be healthy.
They also want her to go to the hospital and meet the PICU docs so that she's more comfortable with them. The baby will live at the hospital for months if she's born so soon.
The holidays aren't going to be very happy or merry for us this year.
Please pray for my little niece and my sister. We really need it.
Steph
I've been making little beaded angels for tree ornaments. I decided to make some for pins for us to wear to remind us of Bailey. I'm giving them to all the grandparents involved for Christmas along with a bible bookmark with an angel on the top. Bailey needs all the angels she can get. 
