Wednesday, December 30, 2009

Spina Bifida



I should have known something could be wrong as you never should have to go to another office for an ultra sound. I didn't think anything of it. I was just excited to get video of this one. I was hoping for some 3d images too. The only one I got was of the defect in our little girl.

Baby girl #2 has Spina Bifida. Spina bifida can adversely affect many body systems including the nervous system, the bones and muscles as well as the kidneys and bladder.

We were told that the opening was low so that is a good sign. There is a clinical trial that we will most likely try to be apart of to be either one to have Prenatal surgery to close up the hole. Or be part of the post surgery trial. They have 3 locations for this. San Fransisco, Philadelphia and Nashville.

This sort of changes my plans of leaving for Virginia because if I get chosen for the prenatal surgery It has to be done by the 25th week and I have to stay at the center until delivery at 37 weeks.

I've read about this and have lots of emotions going on right now. My parents have some friends that have a son with this and he's married and has a job but has had a lot of surgery's and has to have leg braces and wear a catheter and diaper all the time. I know it's going to be a difficult ride but I'm positive that we are going to be stronger for this. I'm so grateful for Kathryn. I'm sure she is going to be a great big sister and be able to help out as they grow up together.

If any of you have information or know someone close to you who has this I would like to talk with them or find some kind of support group to learn more about this.

Thanks for all your love and support.

12 comments:

Sankat said...

(((hugs))). I hope the surgeries go well and fix the problem.

DaNelle said...

Heather! I'm so sorry. Me and Dayla were reading your blog and wanted to say we love you and hope everything will work out. You're such a strong person and if this little girl is anything like Kathryn, she'll steal everybody's heart! Please let me know if I can do anything during this time. I know you have a lot of family, but I am a really good babysitter! We love you!

DaNelle

Rogers Family said...

I am really sorry to hear about that. I hope you make it into the clinical trial. Let us know if and when you are having surgery. I'm sure we would be able to bring you a meal or watch your little girl for a few hours. Just let me know what it is you need help with. Your family will be in our prayers.

Laura Marie said...

Wow...is there any chance of a false result? I do know a family in UT that has dealt with this who were in our ward there. Their oldest and 4th kids have spina bifida (ages 9 and 2, approximately)- both girls. The oldest is in a wheelchair and wears diapers. The other girl is just barely transitioning to a wheelchair.

Laura Marie said...

Oh, if you want the contact information for that family in UT, email me at lilypad49@gmail.com.

Amanda said...

So much love coming your way from way up in Canada. Prayers and fasting for sure too. Heavenly Father only intrusts very special people to care for those who have dissabilities, you and Matthew are truly wonderful people! What a blessing this very sweet baby girl is to your family.

xoxoxoxoxox

Jennifer said...

Hi Heather,
I saw your posting on the SB Moms and Dads list and followed it to your blog. Firstly what a cute blog! I love the pictures of your little girl and it will be exciting to see your newest arrival!

Congratulations on your pregnancy! How exciting that next Holiday Season you will be celebrating with two little girls. I look forward to reading more about your youngest's upcoming birth!

I will send you a private message to introduce myself and my family. I don't want to take up too much room on your comments space. Suffice to say I have a child with Spina Bifida and all is good with the world! Sure we have problems, medical scares and difficulties conquering some simple things but we live a fairly normal life.

Good luck with being accepted into the studies and possible upcoming surgeries. I didn't have those opportunities for many reasons mostly as it had all just started and was still very risky. Feel free to check out our website too. My blog is updated very often...
Best wishes and HAPPY NEW YEAR!!
Jennifer
jennifer@princesrealm.com
www.princesrealm.com

Cassie said...

Hi Heather. I have a son with SB, his name is Caleb and he is 4 years old. I know all too well how scared you are right now. I'll tell you though, if I had only known how wonderful Caleb was going to be I wouldn't have been so scared. We also have a blog if you want to check out some pics of Caleb. I would be happy to answer any questions you have. I will certainly be thinking of and praying for you and your family.

amybresee said...

Heather,

Reading your post on SB moms and dads list was like reading my own story. I too was sent for an additional ultrasound, but thought nothing of it until the doctor gave me the news about my son Nathan. I was too far along in my pregnancy to be considered for the MOMs clinical trials, but given that I have four other children who needed me home I probably wouldn't have been able to do it anyway. I know you are probably overwhelmed right now -- I remember that feeling well. Nathan is 4 1/2 right now and a light in my life and in our family! I have learned that I can do a lot more than I ever thought I could. The Lord has a way of teaching us that. I also noticed that you are a member of the LDS church -- me too! You will find strenghth you never knew you had! Find joy in the journey!

shannonb said...

Oh Heather. I'm so sorry to hear that. You have such a big heart though and so much love to give this little girl. SHe couldn't be coming into a better family. You are in my thoughts and prayers!

Liz said...

Heather I am so sorry. I wish I had more comforting words for you. You are in our prayers.

Rob, Michelle and Luke Greer said...

We are praying for your family. Keep me updated and let me know if I can help in any way.