Spina Bifida Occulta (Karen Park)

·         How does it feel to be the parent of your child?

As a parent of a child with Spina Bifida Occulta, I feel the extremes of everything.  I am extremely blessed to have my beautiful girl, Abby, but I am also in extreme pain thinking about some of the things she will go through.  There are moments when I am torn and under a lot of pressure because there are grave choices to be made in order for her to have a normal childhood.  Sometimes I feel that I can never be educated enough to be in a place to make decisions that may affect her permanently.  I have endless amount of questions no matter how many times I consult doctors, researchers, surgeons, and other parents.  Every case seems to be unique for each person struggling with this and I want to gather information that is specific for my child’s condition.  Fortunately, Spina Bifida Occulta is a mild case of Spina Bifida.  And for the most part, my child can enjoy life with a few minor adjustments.  But as a parent, I cannot help but to worry and always be on my toes even with the smallest discomfort she has. But Abby is such a trooper and I am so proud of her.  

·         How is your child developmentally the same or different from other children at the various ages?

When Abby was born, none of us saw that anything was wrong with her minus a small dimple on her back. She was walking, growing normally, and doing everything she was supposed to do at her age at the right time. She grew up like any other typical child. But recently, her neurosurgeon is recommending that we perform surgery on her spinal cord this month since she is entering a growth period that could stretch her spine and cause problems. This is because by adolescence, the spinal cord has become fastened to the backbone. The nerves of the spinal cord are stretched so there may be symptoms of weakness and numbness in the legs, bladder infections, and lack of bladder and bowel control.  Basically, the more the spinal cord is stretched, the worse the symptoms become.  Fortunately, there is surgery available to relieve these symptoms by reducing the tension on the spinal cord. 

Aside from the success rate of the surgery, I am torn, because I don’t want her to have this surgery. When I look at her, she seems perfectly fine. I’m afraid that if we do this we’ll cause more damage to her yet if we leave her as is the surgeon tells us she could develop other problems that he cannot fix. At the moment, I don’t know what to do.

In addition to this worry, my daughter suffers from problems in the bladder.  This is very common among people with Spina Bifida.  When she was younger, I was not able to potty train her.  I thought this had to do with my poor discipline skills and her unique personality.  But after discovering that she has Spina Bifida Occulta, it completely explains why this is difficult for her.  This is very tough on her especially when she has to be in school or in a public place.  Diapers are worn frequently but even if she feels so embarrassed, there is not much we can do to help her in this area.

I know of another family where they have a son with Myelomeningocele.
This form of spina bifida occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious and most common type of Spina Bifida, which causes nerve damage and more severe disabilities.  On top of my daughter’s symptoms, he is paralyzed from waist down and has hydrocephalus, dislocated hips, and clubfeet. Recently, he had to go into surgery again because his neurosurgeon saw the MRI results showing the Lumbar Dermal Sinus Tract. There was like a tube going from the outside of his skin into his spine where bacteria were getting into his spine.  In comparison to his severity, I am thankful my daughter is only a mild case. 

Depression and obesity is said to be common among people with Spina Bifida.  I am trying my best to be the most loving mother possible to prevent this from happening and I’m sure any parent with a child suffering so much already will try their best to use every preventive measure.  Luckily, my daughter is not paralyzed in any body part or unable to use certain parts of the body.  I try to encourage her to play outdoors, be active as much as she can handle.  I want her to grow up enjoying the things that any other child can experience.

Also, Abby has latex allergy like most children with Spina Bifida Occulta.  It is not severe but I always have to be cautious during any doctor visits or treatments because the doctor may be unaware of this. I have my daughter wear an allergy band (for latex) on her wrist at all times in case she has to go to the nurse’s office at school or even in the school cafeteria where the lunch helpers or janitors often wear latex gloves. There are always extra precautions I have to be aware of and inform and educate the people around me.

·         What professionals/agencies do you deal with? What services are available to you and your child?

When Abby turned 3, she was eligible for special education services through her local school system. Children with Spina Bifida will qualify for services under a special education category known as orthopedic impairment or disability. Abby was also included under the "other health impairments" category. Because she was eligible for special education she was able to have access to related services including physical therapy, occupational therapy, speech therapy and early childhood special education. I didn’t have to use these services too much since she has a minor case of Spina Bifida.

Also, if any parent is unsure of their child's rights to special education services they can contact their local Parent Training & Information Center or their state Department of Education. The agency I contacted was The National Information Center for Children and Youth with Disabilities (NICHCY) at 1-800-695-0285.  They also told me about other local services and resources that were useful to my family.

Another service that is available to me is any SBA affiliated group, United Way or Red Cross Agency.  I am able to ask whether an emergency resources program is available, or for referral to a local source of assistance. I can also contact the social services department at my Spina Bifida clinic or hospital.  Usually cities and counties have health departments that can be beneficial to families.

·         How did you find out about the above services?

The hospital where my daughter was born and other doctors I consulted had a list of resources and agencies to look up.  They are the ones who introduced me to these networks.  I also searched online in hopes to find other information that may be helpful.  Through the web, I was able to connect with other parents who had children with similar conditions as me.  We would find comfort in each other and have discussions in forums about doctor responses and the treatments that are out there. They also introduced me to useful information or connections whenever available. The school Abby attended was not as reliable but only because the special education/health services do not deal specifically with Spina Bifida patients on an everyday basis. I feel that it’s up to me to be responsible in being up to date with the latest discussions regarding this.

·         What financial burden, if any, are you experiencing?

Unfortunately, the national headquarters of the Spina Bifida Association does not have the resources to offer direct financial aid to individuals with Spina Bifida. However, there are other sources of aid that have been helpful to others.  

Thankfully, I have been able to receive assistance with hospital care needs.  This is possible due to the Hill-Burton Act. For persons unable to pay, like myself, there is a financial aid service. It is not paid for of course at 100% of her needs, which forces me to have a job that is able to pay for the rest.  But when hospital visits and treatments become frequent, it is hard to maintain a job and care for Abby at the same time.  There are always bills to be paid on top of her needs.  Additionally, I have to spend extra money to find toys or furniture that supports her condition in the best way. 

Sometimes life is difficult but who says theirs isn’t?  I try to see things in a positive light.  This helps me to persevere through this. 

·         What other information do you want to share?

For all parents out there, I want to recommend that they get X-rays and/or MRI (to see if there is a tethered cord or hydrocephalus that needs treatment) done for their child as soon as possible.  Spina Bifida is a common case that happens to 1 in 800 infants.  And depending on the severity of the condition, there are different procedures that need to take place for the child.  I have been connected with a family where their daughter was born with Lipomyelomeningocele, which is in the category of Occulta. Their daughter had her first surgery that took them 6 hours to release her spinal cord.  Because they waited, she already was experiencing some nerve damage to her right side. Once those nerves are damaged they are permanently damaged. Every child responds in their own way. Their daughter could have been paralyzed had they waited any longer. Surprisingly, Spina Bifida often times go unnoticed but the sooner you know, the earlier you may get treatment and prevent further damages.  Spina Bifida is not one condition; it is a multitude of problems that affect the mind, the body, and the spirit.  No two cases of Spina Bifida are ever the same. 

As mentioned briefly before, there are 3 most common types of Spina Bifida: myelomeningocel(the severest form), in which the spinal cord and its protective covering (the meninges) protrude from an opening in the spine; meningocele in which the spinal cord develops normally but the meninges protrude from a spinal opening; and occulta, the mildest form, in which one or more vertebrae are malformed and covered by a layer of skin. 

What's more, most children with Spina Bifida have normal or above normal intelligence.  Some may have learning disabilities or need special tests to find better ways to accommodate to their learning needs. These children can have creativity, wit, and insight in areas teachers or parents may not foresee. Their label of “Spina Bifida child” often masks these talents.  These children need the same nurturing and challenging learning environment as any other student in order to help develop strong academic and social skills. Many of these children will grow up fulfilling their dreams and be motivated to become leaders who hold meaningful jobs, build families, and make significant contributions to society. 

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