If your baby is born with spina bifida, there are steps you can take to help live as normal a life as possible. The first step you will need to take is to arm yourself with all the facts about spina bifida in general, the types of spina bifida, and how they babies born with spina bifida. Remember that this condition may also affect your mental health.
According to the Centre for Disease Control, your baby will most likely suffer from one of the three most common types of spina bifida. These are Myelomeningocele, Meningocele, and Spina Bifida Occulta.
Myelomeningocele: The CDC states that this is the most common form of spina bifida. “When a baby has this type of spina bifida, a sac of fluid comes through an opening in their back. A part of the baby’s spinal cord and nerves found in this sac are damaged,” says the CDC.
With this type of spina bifida, your baby will be at risk of moderate to severe disabilities. These disabilities may range from inability to control bowel movement, inability to move legs, and inability to feel sensations on legs.
Spina bifida occulta: According to the CDC, this is the mildest form of spina bifida. If your baby has this form of spina bifida, he or she will have a small gap in the spine, but there will be no opening or sac on the back.
“With this type of spina bifida, the baby’s spinal cord and nerves will usually be normal. This means that this type of condition may not be discovered until late childhood or adulthood,” the CDC states. Interestingly, this type of spina bifida will not cause the baby any disabilities.
Meningocele: The CDC explains that with this type of spina bifida, the sac of fluid will come through an opening in the baby’s back. However, the spinal cord will not be in this sac. “This type of spina bifida can cause minor disabilities in the baby, but there will usually little to zero nerve damage,” the CDC states.
Once spina bifida has been diagnosed in your baby, you will want to keep medical experts on your speed dial. This will help you get acquainted with the dos and don’ts of handling spina bifida. Some of the medical experts you may need to get in touch with and stay close to include;
An orthopedist: This is the medical expert who specializes in the correction or prevention of deformities, disorders, or injuries of the skeleton and associated structures. This medical expert will work with the baby’s muscles and bones.
An urologist: This is the medical expert who specializes in the treatment of the urinary and reproductive tract system. This medical expert will come in handy in checking and treating your baby’s kidneys and bladder.
A neurosurgeon: this is the medical expert who specializes in the diagnosis and surgical treatment of disorders of the central and peripheral nervous system, including congenital anomalies, trauma, tumors, vascular disorders, infections of the brain or spine, stroke, or degenerative diseases of the spine. This is the expert who will check on your baby’s brain and spine development.
Uniqueness in development
When raising a baby born with spina bifida, it is recommended that you avoid comparing your baby’s condition and health challenges to those of another baby who has spina bifida.
According to the CDC, there are no two babies who ever have the exact type of spina bifida with the exact type of challenges, responses, and reactions. Certain issues will be more manifest in one baby and others more severe in the other.
However, with any types of spina bifida, you should prioritize physical activities, especially if your baby’s movement has been affected. The CDC recommends that if your baby has spina bifida, they can still get to:
- Play with toys, such as activity mats
- Enjoy parks and recreation areas
- Do exercises recommended by their physical therapist
Don’t lock them up or hide them out of fear that they will be stigmatized if the community learns about their condition and health challenges. According to the CDC, babies born with spina bifida can have their condition managed, and go on to live their lives to the fullest potential.
The skin
This will be one of the most affected in a baby born with spina bifida. According to the CDC, babies with spina bifida will be susceptible to developing sores, blisters, calluses, and burns on their ankles, feet and hips. However, the CDC recommends the parent can protect their baby by:
- Checking their baby’s skin every day for signs of redness. This should be done including under their braces.
- Trying to avoid hot bath water, hot irons and hot or unpadded seatbelt clasps that may cause burns.
- Making sure the baby does not stay out in the sun for too long.
- Making sure the baby is not sitting or lying in one position for long periods.
Allergies
A large number of babies born with spina bifida are allergic to latex or natural rubber. According to the CDC, protect your baby by ensuring that they are not exposed to using rubber products including rubber nipples and pacifiers. You can go the extra mile by putting a bracelet or tag on them that alerts other people on their kind of allergy.
Community support groups
Make an endeavour to join a community support group where other parents of children with spina bifida meet up. This will be good for your emotional and mental wellbeing. Apart from being an avenue for you to learn more about spina bifida and all types of spina bifida, support groups will also be a great ventilation for you to exhale.