Disqualified from MOMS fetal surgery study

[atrigg]

Hi all,

I am new and my mom just sent me your way. I am 32 with a 2 year old daughter and conceived our second from IVF. I am 28 weeks pregnant, due in February, with my second baby, a boy. We went to UCSF for the full evaluation and found out that our baby had some blood on his brain which disqualified us from the surgery. I was for the surgery and my husband was against it. I guess that solved the difficulty we were going through making a decision but I highly recommend everyone who is possibly interested in going to learn from the doctors and staff working on the MOMS study. You can read about our experience there at texastriggs.blogspot.

Each day I find myself different emotionally. I have known about the diagnosis now for 8 weeks. L5-S1 lesion, myelo, chiari II or IV and hydro. Our little guy kicks all the time with no club feet and seems to be doing fine with the exception of the brain issues. I have been really worried about how his brain is going to develop the further I go along. I go to the doctor here in my home town again tomorrow to find out if the blood is still there and to see when to schedule the delivery.

Hopeful today and trying to stay that way.

[LisaJoy]

Hi and welcome!

It sounds like you have been getting good information about your baby's prospects. I'm so glad for you -- if you read around in the various forums here, you will find that some people get pummeled with unreasonable medical pessimism.

This is a great place for support and encouragement. You will find expectant parents, parents of infants and children of all ages, and quite a few adults with SB. I'm in the latter group -- I have lipomeningocele (closed form of sb) with sacral agenesis and split cord malformation. I grew up in Dallas, by the way -- received outpatient care at Scottish Rite. I teach history at the college level.

Spend some time reading around the forums and ask anything you want (you'll see that we talk about pretty much everything sb-related and some things that aren't!).

Lisa

[LisaJoy]

I read your blog, and I just wanted to say that it is such a blessing to know that some expectant parents get such encouragement from their doctors. As far as not getting into the trial -- "all things work together for good."

[janjanwhit]

hello. i am 28 weeks preg tomorrow! I have a 3 year old son and my unborn son has sb. I am having another scan on wednesday. he has hydro , a clubbed foot, charaii thingee and lemon head. well he did at the last scan 8 weeks ago. i am 25 years old. my husband and i planned this pregnancy. hearing all the negative things from doctors has been really depressing.

[smoop]

Hi there.. welcome! I have a 3 year old daugther named Analise with SB. We considered the MOMS study but decided against it. The biggest reason being that I had a one year old at the time.

I was told my daughter would be L1-2 but she ended up around L3-4ish. She has a shunt (never had a problem), walks with long leg braces and a walker (and recently started crutches). She is strong-willed and extremely outgoing. She has taught me so much in her short life and continues to teach me along the way. What a blessing she has been to me and my family. I know that this time is extremely hard right now. Hang in there-- it will soon be over and you'll be holding your little boy. God bless!