Some of you may know my sister Heather and that she is expecting her second baby in May, well on Monday she had an ultrasound and found out they were having another little girl, they were so excited but were also told they didn't get good measurements so she needed another ultrasound. That happened yesterday morning and it was then that she was told their little girl has Spina Bifida. If you are like me I knew they name but not really what it meant, it is when the spinal column doesn't close all the way and leaves a hole. The following is from her blog post to tell you a little more but if you happen to know anyone with this condition pleas pass it along because Heather would love to talk to some others people who have already experienced this kind of news. Also if you would like to join our family in a fast for Heather and her family we will be doing so this Sunday.
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
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3 comments:
Hey Rachel...sorry to hear about the sad news. Kian actually has a deep indentation at the base of his spine that I kept bugging his Pediatrician about after he was born. She kept dismissing it and would say things like, "If it had stayed open then you would need to worry but it is all closed up". Really comforting! Yeah right. Anyway, after nosing around on the internet for a while I discovered that the indentation could be a sign of Spina Bifida in it's mildest form (Occulta). Armed with information I brought the subject up again with the Dr and she said that Kian might have a hard time with his bladder at worst and that potty training might be a disaster. 4(almost 5) years later Kian is doing just fine and has never given any signs of being affected. During my research though it sounded like Spina Bifida could affect many people without them even knowing it. My point is, your sister's baby might have a really mild case since there are varying degrees of Spina Bifida. Turns out my Grandpa had it too and was never really affected by it. Scary times...I know. Your sister and her sweet family will be in our prayers. Happy New Year!
I am so sorry to hear this. We will remember them in our prayers.
Thinking of HEather and what she must be going through! xo's
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