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  • My daughter Francesca

    Hello all, my name is Eric and I have a new daughter named Francesca. She has Spina Bifida, at (approximately) the T7 vertebrae.

    Anyone have any insight into what her physical future might be?

  • #2
    It truly depends on what neurological issues she may have. This is so individual. However, if she had a complete transection of the spinal cord, she would be able to be independent in all of her activities and her ADL's (activities of daily living). She would be able to drive with adaptations.

    I would recommend that you ask her phyicians what type of neurologic involvement she has. That would be helpful in giving you a better picture.

    How lucky she is to have you as a Dad!

    CKF
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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    • #3
      I agree with CKF. Much will depend on the extent of her individual lesion. and spinal cord defect.

      I would also recommend that you look into linking up with other SB families and support groups. Many include educational programs in their meetings. Your local large children's hospital is likely to have such a program.

      In many areas, there are local chapters of this organization as well:

      http://www.spinabifidaassociation.org

      This site is also helpful:

      http://www.spinabifida.net/

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      • #4
        To tell you more about Frannie: She was closed/shunted at 36hrs. We've been told she'll be cognitively normal. However, we're curious how potty-training will go and how elimination will go for her going forward. The things we're most concerned with are: learning to cath/how she'll poop. And is she destined to wear diapers for life.
        Last edited by etv78; 05-13-2013, 09:47 PM.

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        • #5
          Again, without knowing how much damage there is to the actual cord, it is impossible to say. The range of functional deficits with SB is quite wide. How old is she now?? At some point she needs to have urodynamics done to determine the extent of neurologic damage to bladder control, and if there is any potential for any voluntary control.

          Regardless, even for those with no voluntary control of the bowel or bladder at all, diapers are rarely required. While "toilet training" in the traditional sense is not usually an option, it is possible that she will be able to be free of incontinence by the use of routine intermittent catheterization, and a daily bowel program. It is recommended for children with SB that they start to learn how to do these things for themselves prior to school age. Working with a good habilitation specialist physician (such as a pediatric physiatrist) and nurse will be important in order to develop a customized and individualized bowel and bladder management program. Some with SB choose to go with surgical interventions (such as a Mitrofanoff procedure to make self catheterization easier for a female, or even colostomy for bowel care) but most do not need to take such drastic measures.

          Of course she will also need an IEP prior to starting school so that any of her needs in this area can be accommodated by the school before she starts.

          Where are you located?? What resources have you already identified? Most pediatric rehabilitation centers are experienced with working with SB children as outpatients as well as inpatients, and would be an excellent place to start with therapy and habilitation interventions. Technically, instead of rehabilitation, we talk about habilitation for children who are born with a disability, vs. those who acquire one after birth or childhood.

          It would be a big help to all of use if you could complete your profile.

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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          • #6
            She's 6 months old. Yeah I know I'm way early asking stuff. Thanks about the profile. :smack: didn't even see that.

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            • #7
              What exactly is a Mitrofanoff procedure? Is she likely to ever walk? She's not crawling yet, BUT is trying to pull herself around on her belly.

              What kind of/how much sensation can we hope she'll have?
              Last edited by etv78; 05-14-2013, 03:13 PM.

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              • #8
                I wikied Mitrofanoff. That sound like a good idea for her #1s, but we'd like to avoid surgeries we don't need to subject her to. Anyone have experience raising a girl w/SB?

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                • #9
                  Hi. I have a 9 yr old child with a spinal cord injury at T1 so less balance but wears a back brace to try to delay her spine growing wonky (scoliosis) but at T7 it shouldn't be as much a concern and she should be totally independent-with attitude if my girl is anything to go by! My daughter does wheelchair sports with children with spinabifida as there are so many more of them than those with spinal cord injury. Those parents often feel sorry for my daughter as she was injured at 4 and knew what it was like to walk whereas their children are very accepting of the way things are. Strangely i am quite envious of children with spinabifida as the ones in noirins wheelchair basketball team have such skill and often have some feeling in legs and even some hip movement and some can cycle an adapted tricycle, however hand cycles are great. Some do use calipers to walk but they are not always functional sand take time to get places as well as get on and off. All i have met so far have had bowel bladder issues but as the nurses says these can be managed and the other 9 yr old children with spina bifida can catheterize and even assist or do their own bowel programme. the idea of catheters is a little squirmy but becomes the new normal very quickly. spinabifida support groups are great and there are usually holiday camps in the summer where they get to do adventure weekends and such and you can pick the brains of other parents. A good urologist is worth getting and orthopedic doctor to keep an eye on the spine and hips. I really urge you to get her in a good supported standing program me when she is old enough and spend tummy time so as to get stretch on hips. good luck with your new adventure, don't forget each other, take care, sonia.

                  also with good awareness the lack of sensation does not have to be a problem-just needs to be very careful to prevent pressure sores and burns but again-a new way of life!

                  ps didn't mention the shunting as know nothing about it- definitely a reason to talk to parents of children with sb and unlikely on this site.

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                  • #10
                    As a almost 44 year old with Spina Bifida & Hydrocephalus I have to say that the Hydrocephalus related issues caused a much bigger impact in my life then the paralysis issues. Based on my experience if I was the parent of a SB child I would place more focus on potential neuro-cognative issues, learning disabilities, visual perceptual issues etc. Integrate her with her able bodied peers and treat her like a normal child as much as possible. Work on her independence from the get go. I've seen a great deal of immaturity and lack of knowledge among teens and young adults with SB. It's one of the things that drove me to carecure I have more in common with my SCI peers then I do with my Spina Bifida peers.

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                    • #11
                      Not sure where you are in MA, but this is available in the Boston area:

                      http://sbagreaterne.org/

                      They also support several on-line discussion, support, and education programs:

                      http://sbagreaterne.org/programs-ser...ussion-groups/

                      (KLD)
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                      Comment


                      • #12
                        I agree with everything our nurses have said. You really need a specialist in spina bfida for your daughter. Especially for both long term management of any shunting needed and to determine her level of injury neurologically. And yes, a good orthopedist to give her the best chance of growing with a straight spine which can effect so many other life systems.

                        Congrats on a new child!
                        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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                        • #13
                          canuck-From what I know, disabled kids are well mainstreamed here in the States.

                          Sue-As I've mentioned, she slithers on the floor ATM, gets plenty of "tummy time". Will she ever walk?

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                          • #14
                            I was primarily thinking activities outside of school.

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                            • #15
                              I have a daughter with sb/hydro, she is close to graduating from college, drives, lives in the dorm etc. Your daughter is just a baby, enjoy her and take one step at the time. At this point finding a good team of doctors is very important: good pediatric neurosurgeon, urologist, ortho. Try to find sbaa chapter close to you - other parents are extermely helpful. SBAA has something called " education days" - mini, one day conferences on spina bifida. You can find one close to you - it will be helpful too. I think next year they will have a regular sb conference . This conferences are about 4 days long and give tremendous amount of information and contacts. On sbaa site there is also something called sb university- a series on on-line videos on different aspects of spina bifida.
                              When she gets a bit older watch out for learning problems related for hydrocephalus - it influences things such as organizational skills or time management so paying attention to that when a kid is little will help her in the future. Also - enroll her in adaptive sports as soon as get gets old enough ( around 5). Kids really love it and learn a lot of independence though programs like that.
                              Please aks if you have any questions.
                              Good luck and have fun with your new baby!
                              M

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