Spina bifida is known as the most common permanently disabling birth defect in the U.S. It occurs when the spine of the baby fails to close in the first months of pregnancy. The complications from SB are different for everyone and there is no known cure. It is sometimes linked to a lack of folic acid in the mother or environmental factors. It is good when planning a pregnancy to take preventative steps by taking a prescribed dose of folic acid months prior to conception. Spina Bifida rarely passes on to the next sibling born. Many families have had one child with these complications and many more children with none.
What Can I do?
Do not think the worst or start assuming. There is a lot of information out there that only provides the worst cases. But most children today live normal lives even without extensive therapy. You may be upset and need a lot of emotional support to start, but at some point you will be ok. You CAN take care of your child and do all that you can to help them. They are born just as cute and adorable as any other child. Do not let doctors convice you to abort. Most children born with this defect are very intelligent and can accomplish many great things. They truly are special children...but being born with this does NOT mean we have to accept it and continue just living with it. This is why we are here. We are here to provide information, financial support and more on what we are doing to try and beat Spina Bifida. We are advocates for our children and your loved ones as well and will fight for any and all treatments and therapies that will help them. If no one takes the time, it won't happen. Doctors have a job to do...and most don't have time to sit fight for Spina Bifida although they may desire to help their patients. There are some awesome doctors out there and we are blessed to have them, but they cannot always save everyone and solve all problems. Someone else has to do it!
Many of our families have done treatments and therapies that are not the most common path to take, but in doing so, they have seen amazing results...including seeing their children require less to no cathing or gaining more sensation in their legs! Throughout your journey, during your pregnancy even, you should seek all things that could help your child. Do not wait as you know Spina Bifida complications tend to get harder as a child gets older. It is best to do therapy and treatments while they are young. It is easier to keep their legs up and proportioned to their bodies, which is so vitally important. Lets put it this way...if there was a cure tomorrow...would your child be able to walk on tiny legs? Not if you don't keep them in therapy and exercising as much as they can. We are not saying to put them through an extreme amount. But a small amount of standing or walking in braces daily can help their legs, hips, and much more of their bodies. When your child first turns one or maybe even earlier, you need to start speaking with your therapist about getting them harnessed up on a treadmill. This has shown to get children walking in braces sooner. You will need to practice everything that a child with normal abilities would do. Do not limit them and you will see no limits. If you plan to fail, you will...
Do not give up! It is easy to get caught up in listening to only the negative comments and info. out there...but if you have a strong will anything can happen!