Born with spina bifida

Posted by talha @talha, Jun 22 9:22am

Hi everyone ,I have a baby she was born with spinal befida nd hydrocephalus.spinal was repaired bt still she can’t sit by herself. No theraphy to take her to

Hi @talha and welcome to Mayo Clinic Connect. Having a baby with any issues can be difficult. I'm tagging fellow members @gusdaisy, @pammiesue51 @bernese53 and @safetyshield who have experience with spina bifida.

You might be interested in this video Q&A with Mayo experts Dr. Angela Mattke, Dr. William Shaughnessy and Dr. Sheri Driscoll.
– Video Q&A about Spina Bifida https://connect.mayoclinic.org/webinar/video-qa-about-spina-bifida/

Would you mind sharing a little more information with us? How old is your child? Does he or she have a pediatric physician? What options were recommended when your child was born?

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I was told at three month when I made a scan that my baby have hydrocephalus ,it was shocking and was so scared.so d doctor told me I should wait for delivery .it was a C-section so I was told after birth that she got spinal befida too, d spinal was repaired after a month.as I was waiting for her to recover they told me she has to put vp shunt to drain d extra water in her head to avoid to b big ,but it was done at 3month old my baby so d head already going big .now she is 12month bt still can't sit for herself coz of d head balance.

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@talha

I was told at three month when I made a scan that my baby have hydrocephalus ,it was shocking and was so scared.so d doctor told me I should wait for delivery .it was a C-section so I was told after birth that she got spinal befida too, d spinal was repaired after a month.as I was waiting for her to recover they told me she has to put vp shunt to drain d extra water in her head to avoid to b big ,but it was done at 3month old my baby so d head already going big .now she is 12month bt still can't sit for herself coz of d head balance.

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She is a healthy child bt the physiotherapy is not helping anywhere ,coz I do take my child for therapy still no difference.so I want to ask mayo clinic to give me advice way to do or how can I train my baby at home

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Hi @talha I think getting a second opinion at Mayo Clinic is a good choice. If you would like to make an appointment, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63

I have also included the page on Mayo's site where you can see the list of specialists that treat both hydrocephalus and spina bifida.
https://www.mayoclinic.org/diseases-conditions/hydrocephalus/doctors-departments/ddc-20373611
Please touch base here on Connect to let us know the outcome of your visit. Has her shunt been checked recently to make sure it is working properly?

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@amandaburnett

Hi @talha I think getting a second opinion at Mayo Clinic is a good choice. If you would like to make an appointment, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63

I have also included the page on Mayo's site where you can see the list of specialists that treat both hydrocephalus and spina bifida.
https://www.mayoclinic.org/diseases-conditions/hydrocephalus/doctors-departments/ddc-20373611
Please touch base here on Connect to let us know the outcome of your visit. Has her shunt been checked recently to make sure it is working properly?

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@talha another way to get into Mayo would be to ask your doctor for a referral. That's what I did, But Amanda way is a good way too.

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@amanda I live in Africa,so I don't know coz of the lockdown .I really wished to cum to mayo clinic coz I've seen its a good hospital and it helped lots of ppl.as for d shunt it was done,I used to go for checkups bt d doctor discharged her as she told me everything is fine only cum when d baby is not well.

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Am so worried coz my baby not crawling,can't sit by her self and when I consult d doctor she told me things will change as the baby Is growing.

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@lilypaws

@talha another way to get into Mayo would be to ask your doctor for a referral. That's what I did, But Amanda way is a good way too.

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@lilypaws yah it's true for refferal,bt I took this decision coz d doctors not here not giving me any clear way about my baby.just told me things will change as d baby grow they can't do anything

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Hi @talha
Yes, living so far away does pose a challenge during this pandemic. I am not 100% sure if Mayo provides this for international patients and pediatrics, but they do have telemedicine appointments. It might be worth giving them a call to see if they can accommodate that for you. Here is a recent article about their telemedicine program.
https://newsnetwork.mayoclinic.org/discussion/how-video-appointments-are-changing-the-way-mayo-clinic-patients-receive-care/

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@talha

Am so worried coz my baby not crawling,can't sit by her self and when I consult d doctor she told me things will change as the baby Is growing.

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@talha How old is your baby? Is it possible to see a neurosurgeon ? They maybe able to help you? If you type in spinal bifida there is a lot of information online that might help . Treatment early is important for her . I knew a lady who,s child had this and getting in a pool helped her . So they had a pool put in there house and she taught swimming to kids in her home If you can go online to Mayo connect look for a link for this to get information you can use now try to get a appointment I guess Jacksonville ,Fla would be your closest ,not sure exactly where you live . Let us know we care here on connect .

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@amandaburnett

Hi @talha
Yes, living so far away does pose a challenge during this pandemic. I am not 100% sure if Mayo provides this for international patients and pediatrics, but they do have telemedicine appointments. It might be worth giving them a call to see if they can accommodate that for you. Here is a recent article about their telemedicine program.
https://newsnetwork.mayoclinic.org/discussion/how-video-appointments-are-changing-the-way-mayo-clinic-patients-receive-care/

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@talha . I didn't read Amanda's reply to you about telemedicine if they do that sounds great for you .

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@lioness

@talha How old is your baby? Is it possible to see a neurosurgeon ? They maybe able to help you? If you type in spinal bifida there is a lot of information online that might help . Treatment early is important for her . I knew a lady who,s child had this and getting in a pool helped her . So they had a pool put in there house and she taught swimming to kids in her home If you can go online to Mayo connect look for a link for this to get information you can use now try to get a appointment I guess Jacksonville ,Fla would be your closest ,not sure exactly where you live . Let us know we care here on connect .

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@lioness my baby is 12month old now,I would love to get d link to see how I can get help from d lady who got his child in pool to train,I did see a neourosagant bt only rapaired d spinal nothing else rapairings means to close d open wound to not b infected .nothing more they did to her.and I live in Africa (Swaziland) so am too far bt need help

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@lioness

@talha . I didn't read Amanda's reply to you about telemedicine if they do that sounds great for you .

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@amanda yah it's a big challenge for me being far bt the help u can give me it would be a great help for my baby coz she is growing bt still lying down no doing anything

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@talha

@lioness my baby is 12month old now,I would love to get d link to see how I can get help from d lady who got his child in pool to train,I did see a neourosagant bt only rapaired d spinal nothing else rapairings means to close d open wound to not b infected .nothing more they did to her.and I live in Africa (Swaziland) so am too far bt need help

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@talha I don't know how to add a link here but here is the site you can go to Treatment for spinal bifada.com just put it in the search box can you do this?

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