Overcoming the Hurdles of Spina Bifida

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

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