Hi all. I'm hoping someone on here has some info, can pint to resources, or better yet a happy outcome story.
Dp had a scan last Thursday as she was feeling crampy in an unusual way and hadn't felt our baby wriggle for a day. She was 17w4d and has felt "flutters" of baby for about a week.
On the ultrasound, the baby's heart was beating at 156, but we were told there were a few "issues". Apparently the heart looks structurally sound, but our baby has a left sided CDH which is allowing some stomach into the chest cavity and as such pushing the heart to the right side of the chest.
The baby was also measuring at 16w6d and has "asymmetrical" growth where the head is wider than the abdomen (apparently they should be relatively equal about now).
Dp is booked for an Amnio for Tuesday to rule out genetic causes.
This baby is the result of a 3 yr IVF journey and we are so overwhelmed, anxious, scared and overwhelmed with the diagnosis.
Researching Dr Google (I know that's so bad, but needed info on our baby's condition) tells about a 50/50 survival rate, that it's a common as cystic fibrosis, that best case scenario our baby has surgery a few days after birth and is in hospital for anywhere from 2 weeks to 6 months. And worst case scenario - well I'd rather not verbalise worst case scenario as it will make me cry all over again.
Is there a support group on here for CDH?
Anyone have any positive info?
Thanks in advance.