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Follow-up u/s = more bad news

post #1 of 14
Thread Starter 
Hi everyone,
I posted a week ago about my first u/s where they thought there might be something wrong with the baby's cerebellum.
I had my follow-up today where they did a really detailed scan of everything, and there were several problems that showed up.
Some of the connections between the two halves of the cerebellum are not right or missing (they mentioned something called Dandy Walker?).
Something isn't right in the baby's heart--some calcifications (not sure what that really indicates to them).
Something may be wrong with at least one of his hands. I could see that it didn't look quite right, but I'm not exactly sure of the specifics.
They also thought something might not look right with his feet--something about the space between his big toe and the other toes, although I did see his feet myself and thought they looked normal. My DD has long, wide-spread toes. We've always commented on it, and she's normal, so I'm not putting much stock in that specifically.
So now my option is to do an amnio, which we are leaning away from at this moment. As far as I know, there isn't anything that it would tell them that would enable them to fix anything, and I can't think of anything that we would do differently depending on what we found out. So I have to call them back and tell them that.
We go back in a week or two for an echocardiogram for the baby and will go back sometime for another brain scan and to talk with some pediatric neurologist.
I will probably not be able to deliver at the midwifery center where I am currently a patient and will have to deliver at the hospital that is next to the children's hospital. I delivered my twins there and was able to have a nice, drug-free delivery, despite the clinical atmosphere, so that should still be the case.
I'm just feeling very, very overwhelmed with all the information that I was given and just trying to trust in God and remember that the baby is in his hands. This just isn't anything we were expecting to hear today.
post #2 of 14
I haven't ever had to experience anything like this, so I can only imagine what you are feeling, and I am so sorry. I was reading about that syndrome, and it doens't look hopeless, but it has to be earth shattering to you to hear that your beautiful baby is going to have problems. I'll keep you, baby and family in my prayers.
post #3 of 14
I'm sorry you are facing all of this. Prayers for you and your family.
post #4 of 14
I'm sorry to hear that. It must be so stressful right now.
post #5 of 14
This is a LOT to deal with... feeling overwhelmed seems totally appropriate. Try to give yourself time and space to feel those big feelings... and most of all give yourself plenty of compassion. Lots of virtual hugs coming your way...
post #6 of 14
Love and prayers go out to you.
post #7 of 14
I couldnt read and not post a reply. First off hugs to you mama. Im so sorry you got this news and have this added stress. Ive never heard of that condition but did a quick google search and found this link you may find helpful:

http://www.specialchild.com/archives/dz-021.html

Hope you find some comfort.
post #8 of 14

your family and your little baby are in our prayers. Hope to see some happy updates from you in the future, sorry that you are dealing with this
post #9 of 14
s I remember the days of the u/s that showed our twin boys had problems. You're at one of the very toughest times right now, and though I'm sure it feels like it might not ever get easier--IT DOES. My boys were born with a genetic condition called tuberous sclerosis...they noticed it in one of the later u/s anatomy scans and it showed as problems with their hearts.

It hasn't been an easy road, both were very disabled (but able to walk, cuddle, nurse, and do lots of normal things too)...but they are/were sweethearts, too.

The special needs forum here is filled with incredible, incredible ladies who have kids with all different levels of needs or concerns. It's a great place to go if you need people to lean on, or people who understand how uncertain this time is for you.

All my best to you. Take it one day at a time.
post #10 of 14
There are so many woman who can support you here.
post #11 of 14
So sorry you have to deal with this. I don't have any experience or advice for you. I just wanted to give you a
post #12 of 14
I know how you feel. That first week after we found out about the omphalocele was R.O.U.G.H.

I find that information is key for me. I want to know everything I can. We're meeting with a whole team at Children's next month, so we can have everything in place.

If you need to talk, PM me.
post #13 of 14
post #14 of 14
My friends son was born missing the part in his brain that enables information to be transmitted from one side to the other, and a large brain cist. She was told he'd have all sorts of problems but he didnt know that! He is an active, cheeky little two year old who has met all his milestones. I just wanted to let you know that there is always hope.
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