I am not a mom with a child with Spina Bifida, but I am a mom with Spina Bifida

Stephanie - posted on 03/16/2009

I am standing on my own and do not use any type of adaptive or orthopedic equipment. The only times I had to use a wheelchair or crutches was after surgery because I would have my leg (or in some cases legs) casted. I did have surgeries to tighten both of my achilles tendons, which resulted in both of my big toes sticking up when my feet are not on the ground (this has been a big joke in my adult years, lol). I have not had any of my muscles lengthened. What I can say is that if you are unsure of putting your daughter through a surgery, get a second (and third opinion). You need to be confident in your doctors. I do not mind all of the questions, I just wish I had all of the answers, unfortunately I am not your stereotypical person with SB.

Nicole - posted on 03/16/2009

Thank you, it really is reassuring to know that it is possible for her to have almost as normal life as anyone else. You mentioned in another message that your issues have mostly been orthopedic. It looks like your standing in your picture. Do you use a wheelchair? Have you had any surgeries where you had your muscles lengthened? My daughter just had her quadriceps lengthened. They said the don’t like to do that type of surgery on such a young person because it can weaken the muscle. Just wondering if you have any experience with that. Sorry if I’m asking too many questions, but your really the only person that replies to their messages. I’ve also learned that to get the most realistic answers to ask someone who has gone through it because the doctors only scare you.

Denise - posted on 03/15/2009

I will def. make sure the dr's & nurses are aware of his worries/concerns.  And Ive been good all his life to tell him everything that is about to happen to him, no sugar coating. If something going to hurt I tell him (like getting a shot) The appt. on the 26th will be the first of many leading up to his surgeries to make sure we are all fully aware of whats going to happen.  I know its the right decision but I cant help but to be nervous as hell with knots in my stomach already!!!  The summer will be here in no time!

Stephanie - posted on 03/15/2009

As a kid that will be the biggest fear, the unknown. I do remember all of the attention I was given and that definitely made up for all of the discomfort. Keep reassuring him and make sure that the doctors are fully aware of his fears and that they also reassure him. They should also make sure they let him know what to expect before during and after the surgery.

Denise - posted on 03/15/2009

Thanks so much for your reply! Wow 9 surgeries, I can only imagine going through all that as a kid. Its good to know you dong remember the pain relating to your surgeries. Thats the thing he keeps vocalizing the most - that he wants the surgery but he's scared of the pain when he wakes up. I try my best to reassure him that IF he is in pain or the meds arent helping the dr's/nurses will give him more or a diff. drug. He has a appt on the 26th with his Urologist so Im hoping he gives us the surgery date then. Will let you know how it goes. Thanks again for your reply :D

Stephanie - posted on 03/15/2009

Quoting Denise:

If you dont mind me asking Stephanie Im curious at what lesion your SB is? My oldest sons is L5-S1 he walks though not perfect. His issues are w/ his bowel/bladder - he will be 9 this yr & due to no control of either is still in pullups 24/7. He will be having bladder & bowel augmentation surgery this summer .. was curious if you had any simaliar surgeries? If so what was your experience? Pros/Cons?  Physically our son doenst "need" the surgery - his been lucky to never have a bladder or kidney infection/blockage/pressure building up etc... his issues now being in the 3rd grade & his little brother in underwear is more self esteem/mental which we feel is just as important as the physical aspect of things.  Anyhow Im rambling now, lol .. any advice/experience sharing would be awesome :D

Honestly I am not sure what lesion my SB was, I do know that it is just below my pant waist and when I was born the diagnosis was MR and paralysis from the waist down. I do not have any of the typical issues related to SB (neurogenic bladder, bowel issues or neurological issues). All of my problems were related to my balance and my right leg actually being turn 180 degrees when I was born. I have had 9 operations total:  2 to  place my cord back in and to close 2 holes in my spine and then 7 to correct physical problems related to my legs. I think that no matter if your son goes through the surgery or not, he needs to feel that he is just as normal as other children his age. I think that as long as you are trusting of your doctors and their prognosis is favorable to correct the problems he now has, I think it may be worth to do now while he is still young. I had my last surgery at age 11, but now I do not remember any of the pain or rehab. I went through as a result. I hope this helps some and keep in touch I would love to hear how things go.

Denise - posted on 03/15/2009

If you dont mind me asking Stephanie Im curious at what lesion your SB is? My oldest sons is L5-S1 he walks though not perfect. His issues are w/ his bowel/bladder - he will be 9 this yr & due to no control of either is still in pullups 24/7. He will be having bladder & bowel augmentation surgery this summer .. was curious if you had any simaliar surgeries? If so what was your experience? Pros/Cons?  Physically our son doenst "need" the surgery - his been lucky to never have a bladder or kidney infection/blockage/pressure building up etc... his issues now being in the 3rd grade & his little brother in underwear is more self esteem/mental which we feel is just as important as the physical aspect of things.  Anyhow Im rambling now, lol .. any advice/experience sharing would be awesome :D

Stephanie - posted on 03/12/2009

I completely understand and the biggest suggestion I can give is to treat her as normally as you would if she didn't have a disability. My parents continued to make sure that I was treated like any other child, I had chores, I went to school, and I had my own opinion.  You have many twists and turns ahead right now and you need to take each one as they come. I know that even my own mother still feels some guilt, but I want to say that as the child there is no reason to feel guilty, there is no rhyme or reason as to why one child is born with Spina Bifida and the other is not. I feel very fortunate that I will be celebrating my 40th birthday this year with my husband and 2 children. So it is a possibility and what I think parents should do is just what you already are...love your child for who she is and continue to give her every opportunity to grow and experience new things. She may surprise you and you may even surprise yourself. If you teach your child to be independent and think for herself she will develop the confidence and self-esteen needed to overcome the obstacles ahead. I hope this helped and please let me know if you need anything more.

Nicole - posted on 03/11/2009

I am a mother of a 4 month little girl with spina bifida. One of the things that her father and I have worried about is her happiness later on in life. Will she date and find a husband? Will she be happy in general? Will she be mad at us for bringing her into this world knowing she would most likely be in a wheelchair? There are so may emotions when it comes to spina bifida because so may aspects of your life are effected. I guess that things that I would think of as a set back would just be normal to you. Its funny because I know already that my daughter is a very strong girl and will overcome any phisical obstical she sets her mind to. But I worry about how it will effect her mentally and I know its selfish but how it will effect me too, I really want to be strong, but I know that if she ever comes to me fustrated with herself I will feel so guilty. I guess that started off as a question, but was really just something I needed to get off my chest. What advice do you have for me as a mother, of such a special little girl?