Spina Bifida Support Group
Spina bifida describes birth defects caused by an incomplete closure of one or more vertebral arches of the spine, resulting in malformations of the spinal cord. The spinal membranes and spinal cord may protrude through the absence of vertebral arches (called clefts).
My daughter had a sonogram today. DR said Spina Bifita. We are so sad. We don’t know what to do or where to turn. Don’t know much about it. Google is scarey. Looking for hope. We see a specialist on Friday. My cousin, a Dr, says don’t panic until we talk to the specialist. I can’t help it. I guess I’m looking for some hope. We are feeling pretty helpless right now. I’d appreciate anything you could offer. Thank you, Zana
I have had Spina Bifida since birth, and am 17 yrs old now.
Just some quick tips that I have found has helped throughout the years:
1. Make sure she drinks enough water daily. A large majority of the deaths or complications in spina bifida patients are due to kidney failure or UTI, and dehydration is the main cause of kidney and bladder problems. So just keeping up on water is a main thing you and her can do to maintain her health. Also fresh fruit and salad are good ideas also.
2. Immediately get on the wait list for Star kids program. This helps with funds for medical expenses and also planning for your child's future.
3. If your child needs additional doctors (specialists), then do your research. Getting a doctor that best suits your child is a major factor in the mental and physical health of your child (and you).
4. Encourage your child to be as independent as possible. Tell her that even though she will not be able to do some things independently like others can, she can still be very independent if she makes an effort, and will continue to become more and more independent as she gets older. This really will help encourage her in her mindset and keep her from being as depressed about her spina bifida. Well, at least it did for me...
5. Lastly, just be there for her. Tell her that no matter what happens, you (and the rest of her family) are gonna get through it together.
This should give her hope and a feeling of security and that it is gonna be ok.
Please keep me updated on how yall are doing. Hope and pray that y'all can figure things out as you adjust to the changes in your family's life.
I have had Spina Bifida since birth, and am 17 yrs old now.
Just some quick tips that I have found has helped throughout the years:
1. Make sure she drinks enough water daily. A large majority of the deaths or complications in spina bifida patients are due to kidney failure or UTI, and dehydration is the main cause of kidney and bladder problems. So just keeping up on water is a main thing you and her can do to maintain her health. Also fresh fruit and salad are good ideas also.
2. Immediately get on the wait list for Star kids program. This helps with funds for medical expenses and also planning for your child's future.
3. If your child needs additional doctors (specialists), then do your research. Getting a doctor that best suits your child is a major factor in the mental and physical health of your child (and you).
4. Encourage your child to be as independent as possible. Tell her that even though she will not be able to do some things independently like others can, she can still be very independent if she makes an effort, and will continue to become more and more independent as she gets older. This really will help encourage her in her mindset and keep her from being as depressed about her spina bifida. Well, at least it did for me...
5. Lastly, just be there for her. Tell her that no matter what happens, you (and the rest of her family) are gonna get through it together.
This should give her hope and a feeling of security and that it is gonna be ok.
Please keep me updated on how yall are doing. Hope and pray that y'all can figure things out as you adjust to the changes in your family's life.