ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel

Overcoming the Hurdles of Spina Bifida

Updated on January 31, 2016
Princess Ava today at 22 months old
Princess Ava today at 22 months old

What is Spina Bifida?

Of the permanently disabling birth defects, Spina Bifida is the most common form in the United States. The name Spina Bifida means “split spine”, quite literally. Spina Bifida happens in utero when the baby is developing and the spinal cord does not completely close. Studies suggest that eight babies are born daily with the spinal malformation of the spine (or something very similar).

Effects of Spina Bifida

Our daughter was born with Spina Bifida and as it limits her abilities, it doesn't seem to hamper her effort at all. Babies born with this defect commonly develop physically at a slower rate than other babies. Our little “princess” Ava began crawling at around 14 months of age and does not crawl like babies without Spina Bifida do. She tends to “scoot” her legs utilizing her core or trunk muscles, more so than her legs.

New born baby with Spina Bifida

My Princess born with Spina Bifida Myelomeningocele (Meningomyelocele)
My Princess born with Spina Bifida Myelomeningocele (Meningomyelocele)

What causes Spina Bifida?

No one is quite sure what causes this spinal malformation, however there are as many theories as there are different types of Spina Bifida. Our doctors informed us that their best guess as to the cause of Ava's condition is her mother's diabetes. When not kept in check, diabetes can cause this birth defect. Before we knew that we were pregnant, Elaine was not as diligent in the care of her diabetes as she should have been. It has also recently been brought to my attention that certain migraine medications can cause Spina Bifida when taken during a pregnancy.

What is Spina Bifida?

Spina Bifida Occulta

Often referred to as “hidden Spina Bifida” this form of the disability is found in roughly 15% of healthy people, who aren't even aware that they have it. Usually Spina Bifida Occulta doesn't show any obvious or visible signs and causes no harm. The nerves and spinal cord form normally. Most of the time people with Spina Bifida Occulta don't find out that they have it until, for some unrelated reason they get an X-ray of their back. However, there is a small percentage of people with Spina Bifida Occulta who develop neurological symptoms accompanied by pain in their neck and back or the effected area. Sometime a neurosurgeon will be required to investigate a finding of tethered cord.


Occult Spinal Dysraphism (OSD)

When an infant has Occult Spinal Dysraphism, they will have a visually noticeable dimple in their lower back just above their buttocks. Because this dimple is a common physical attribute in babies, a doctor will examine the child, as well as perform tests to diagnose whether or not the baby has this affliction. Other signs of (OSD) may include red marks or hyper-pigmentation in patches on the back, small patches of hair often accompanied by lumps. In (OSD) the spinal cord often forms normally yet as the child grows serious problems will arise.


Meningocele

Causing the spinal cord to poke through the spine like a small bubble, a meningocele will not usually be accompanied by nerve damage due the sac being sealed and retaining its fluid. More often than not, children with this form of Spina Bifida are left with only minor disabilities.


Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica

As the most severe form of the birth defect, this is the form of Spina Bifida that plagues my daughter. Myelomeningocele is when not only does the spinal cord not completely form, but protrudes from the sac that it is enclosed in as well as through the lower back. In this form of the birth defect the spinal cord is exposed via an opening in the child skin as well. Surgery is required immediately after birth to close this opening as well as the spinal sac that holds the spinal fluid. Myelomeningocele is a condition that will usually leave the child with some form of disability. In Ava's case, her disability has also left her with a cystic right kidney (which will need to be removed very soon) that is causing frequent urinary infections. She also was required to have a permanent shunt placed in her head to drain fluid to her stomach.

Preventing Spina Bifida

To help aid in the prevention of Spina Bifida it is recommended that women who are trying to conceive or are pregnant take folic acid at the rate of 400 mcg (.4 mg) daily. As more than half of the pregnancies in the United States are unplanned, the Spina Bifida Association recommends that all women who are sexually active follow this advice. However, as with any medical advice that you get online, I suggest that you consult with your physician first.


Speaking from experience, receiving a diagnosis of Spina Bifida can be devastating. However there are many medical advancements in the treatment of Spina Bifida. It is a long road, but not impossible to overcome. There will be a lot of doctors and therapist involved in the treatment of your child's condition and it can become quite overwhelming. With that said, I simply ask that you don't give up, after all that new life is completely and utterly dependent on your support. It will be a lot of work, but he/she is worth it. Once you begin to see progress it begins to seem much more easy to cope with. There are also many support groups out there if you think they will help you cope, I recommend that you find one that you are comfortable with. Not all good advice comes from doctors and therapists, often other parents who are dealing with their child's affliction can offer some of the best advice you'll ever hear.

Update

Well, Ava is 3 years old now (she'll be 4 in July). She now has a wheelchair for easier mobility. Since I wrote this she has been in therapy once a week and started preschool. At preschool she also has physical therapy a few times a week. Between all of the therapy and the encouragement that she receives, she is making progress. We are also on our second brace. Initially Ava had an RGO(reciprocating gait orthosis) which, if you've never seen one, is just too cumbersome for a 3 year old (at least for her). It takes a tremendous amount of strength to operate. Now we have moved on to a hko(hip knee orthosis) which seems thus far to be much easier for her to use. Her therapists still insist that she will eventually walk.

Spina Bifida baby

Spina Bifida can be overcome
Spina Bifida can be overcome
working

This website uses cookies

As a user in the EEA, your approval is needed on a few things. To provide a better website experience, hubpages.com uses cookies (and other similar technologies) and may collect, process, and share personal data. Please choose which areas of our service you consent to our doing so.

For more information on managing or withdrawing consents and how we handle data, visit our Privacy Policy at: https://corp.maven.io/privacy-policy

Show Details
Necessary
HubPages Device IDThis is used to identify particular browsers or devices when the access the service, and is used for security reasons.
LoginThis is necessary to sign in to the HubPages Service.
Google RecaptchaThis is used to prevent bots and spam. (Privacy Policy)
AkismetThis is used to detect comment spam. (Privacy Policy)
HubPages Google AnalyticsThis is used to provide data on traffic to our website, all personally identifyable data is anonymized. (Privacy Policy)
HubPages Traffic PixelThis is used to collect data on traffic to articles and other pages on our site. Unless you are signed in to a HubPages account, all personally identifiable information is anonymized.
Amazon Web ServicesThis is a cloud services platform that we used to host our service. (Privacy Policy)
CloudflareThis is a cloud CDN service that we use to efficiently deliver files required for our service to operate such as javascript, cascading style sheets, images, and videos. (Privacy Policy)
Google Hosted LibrariesJavascript software libraries such as jQuery are loaded at endpoints on the googleapis.com or gstatic.com domains, for performance and efficiency reasons. (Privacy Policy)
Features
Google Custom SearchThis is feature allows you to search the site. (Privacy Policy)
Google MapsSome articles have Google Maps embedded in them. (Privacy Policy)
Google ChartsThis is used to display charts and graphs on articles and the author center. (Privacy Policy)
Google AdSense Host APIThis service allows you to sign up for or associate a Google AdSense account with HubPages, so that you can earn money from ads on your articles. No data is shared unless you engage with this feature. (Privacy Policy)
Google YouTubeSome articles have YouTube videos embedded in them. (Privacy Policy)
VimeoSome articles have Vimeo videos embedded in them. (Privacy Policy)
PaypalThis is used for a registered author who enrolls in the HubPages Earnings program and requests to be paid via PayPal. No data is shared with Paypal unless you engage with this feature. (Privacy Policy)
Facebook LoginYou can use this to streamline signing up for, or signing in to your Hubpages account. No data is shared with Facebook unless you engage with this feature. (Privacy Policy)
MavenThis supports the Maven widget and search functionality. (Privacy Policy)
Marketing
Google AdSenseThis is an ad network. (Privacy Policy)
Google DoubleClickGoogle provides ad serving technology and runs an ad network. (Privacy Policy)
Index ExchangeThis is an ad network. (Privacy Policy)
SovrnThis is an ad network. (Privacy Policy)
Facebook AdsThis is an ad network. (Privacy Policy)
Amazon Unified Ad MarketplaceThis is an ad network. (Privacy Policy)
AppNexusThis is an ad network. (Privacy Policy)
OpenxThis is an ad network. (Privacy Policy)
Rubicon ProjectThis is an ad network. (Privacy Policy)
TripleLiftThis is an ad network. (Privacy Policy)
Say MediaWe partner with Say Media to deliver ad campaigns on our sites. (Privacy Policy)
Remarketing PixelsWe may use remarketing pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to advertise the HubPages Service to people that have visited our sites.
Conversion Tracking PixelsWe may use conversion tracking pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to identify when an advertisement has successfully resulted in the desired action, such as signing up for the HubPages Service or publishing an article on the HubPages Service.
Statistics
Author Google AnalyticsThis is used to provide traffic data and reports to the authors of articles on the HubPages Service. (Privacy Policy)
ComscoreComScore is a media measurement and analytics company providing marketing data and analytics to enterprises, media and advertising agencies, and publishers. Non-consent will result in ComScore only processing obfuscated personal data. (Privacy Policy)
Amazon Tracking PixelSome articles display amazon products as part of the Amazon Affiliate program, this pixel provides traffic statistics for those products (Privacy Policy)
ClickscoThis is a data management platform studying reader behavior (Privacy Policy)