20 weeks, just found out

[Shelly]

Hi, I just posted in the introduction page, but I'll post again here. I am 20 weeks 5 days along with my third child. It's a little girl. On Tuesday we had the ultrasound, and found out that she has myelomeningocele in the lumbar region. We will be going in for more an MRI and ultrasound Monday for more specific information about what vertebrae. We are still reeling, and finding out as much as we can online. It just gets so overwhelming when we are looking at everything all at once. I think, for me, it will be so helpful to talk to people who are going through this, and who have gone through this. We are considering the MOMS study, and trying to get all the paperwork in to them. I spoke with someone there yesterday who gave me all the preliminary questions and is sending us more information. To make a decision like this without even knowing if you will qualify, let alone, get the surgery, and make preparations for your children/ family for nearly 4 months is something I am trying to wrap my head around right now. The issue is, we really have to know now, because this would all start in the next few weeks. I know some of you have been through this, and I would love the support, advice, and information you could help us with. I know God wants this little one in our home, and we are really anxious to get in touch with all of you in this community.

[smoop]

Hi Shelly-

Sorry to hear about your daughter. My daughter was diagnosed during my 18 week ultrasound. At the time I had a 12 month old son. I had seriously considered the MOMS study but it just wasn't feasible with a baby-- having to leave my home for a couple of months. I guess if I had been reassured that we would have been chosen for the operation I would have considered it more seriously. I know several people who went through the surgery.. many of those children don't have shunts. That really would be wonderful to not have to deal with the hydro/shunt. Two of the children I know have very serious cases of SB so I'm not sure how the utero surgery helped them at all. It's a hard decision, one that only you can make.

My daughter, Analise, is turning 4 soon. She has a lumbar lesion (P/S don't get hung up on what level they tell you because they're often wrong-- we were told L1 and she's actually L3-4ish). Analise was shunted at 3 months old. She currently walks with long leg braces and crutches. She is an absolute blessing to our family.

[monica]

Hello Shelly,

I also have 3 children and my youngest was born with Myelomeningocele level S1-L5 and we found out at our 18 week ultrasound. I have heard of the study, but it was not really offered to us. My son just turned 2 in April and he had surgery to close the opening on his back at 7 hours old and then at 3 days old they placed the shunt. I have to say that I agree with Smoop... that if surgery alone can at least greatly minimize the chances of having a shunt, I think that is great... although no one can make that final decision to have that surgery but you. My son started walking in March all on his own and he just has little plastic inserts that go in his shoes. He has Chiari II Malformation, nuerogenic bowel and bladder so we cath him 5 to 6 times per day and he can go 10 hours at night. He had his first shunt revision in March and has been doing great since... Other than that he has been a very healthy little boy and he is such a joy, and blessing to have in our family. I hope that this can be of some help to you and I wish you all the best with your new bundle of joy on the way.

[ilovelucy]

Welcome, Shelly! I'm a new member here as well. I found out a little over 2 weeks ago that our baby girl, Lucy, will be born with what they say is a "severe" case of SB. I am 30 weeks pregnant.
I wish I knew more info about the MOMs program although, from what I understand, I am too far along for this study and they doubt that Lucy's SB would qualify (whatever that means).
I'll keep you in my prayers, Shelly. Please keep us posted. If you ever need anyone to talk to, feel free to call me. I'll PM you my phone number.

Annie

[Shelly]

Thank you all for you kind words and encouragement. I think this is all starting to settle in. I keep telling my husband how amazing this is to have such a wonderful community of parents, and people with sb to talk to. Just in your few messages, we have learned more practical information about the MOMS study than we were able to find out from them. Because it is a blind study, they are keeping all their facts close to the vest. I can't wait to talk to all of you about what we have to look forward to, and I love reading about the joy that these children have brought into all of your lives. I'm sure our daughter will bring so much love and light into our home. By the way, do you guys post your personal websites on here? We do have a family website that we have had for a few years. Thanks again!

[Barb]

Hey Shelly,

Nice to meet you and congrats on your baby. Feel free to put a link in your signature like mine. Personal sites and such are A OK to post :)

Barb

[cadon's mum]

HI Shelly i also have three other children along with cadon who is now 5 months old, he has sb myelo, chiari 11 and hydro which is shunted. we have to cath just once a day as a precaution. congratulations on your pregnancy.!!

[Bigwilli]

I just read your post and wa swondering how things are going? My daughter Zoe was born almost 1 year ago and is doing great. I definately was devasted when I found out but her birth has brought so much joy and all the things we worried about never happened. Keep in touch and ur in my prayers

[jveprek]

You can read our blog and find out all about what our first 8 months has been like (www.missmadisjourney.blogspot.com). Sometimes life is hard, but it's always full of joy and it is sooooooooo worth it! Good luck!

[jveprek]

Here's a poem i wrote for Madi. Maybe it will encourage you :). It's on Madi's blog

When at first we heard the news
We were a bit blown away
It was very hard to hear
You may not walk one day

We cried for you
But not from a lack of love
We mourned what we thought you could not have
Though we knew you were a gift from above

We were thankful God blessed us with you
And knew it would all be okay
We stopped our crying and smiled
Thanking God for blessing us this way

You are a very special girl
There is no doubt in our minds
You will accomplish great things
Who you are just shines

You are beautiful and smart
Compassionate, determined, and sweet
Even though you are still so small
We know you can accomplish any feat

We are honored to be your parents
And love you more than you know
We promise to give you the best in life
We look forward to watching you grow

Thank you for blessing us so abundantly
By just simply being who you are
You are absolutely perfect to us
Our bright and shining star

We love you!