About

I’m Tara, a stay at home mom of seven wonderful blessings. The seventh of which happens to have Spina Bifida Lipomyelomeningocele Occulta.

Working on a proper description. Starting with a break down of terms.

Spina Bifida

Spina bifida is the most frequently occurring permanently disabling birth defect. It affects approximately one out of every 1,000 newborns in the United States. More children have spina bifida than have muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.

Spina bifida, the most common neural tube defect (NTD), is one of the most devastating of all birth defects. It results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn’s back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

Because of the paralysis resulting from the damage to the spinal cord, people born with spina bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with spina bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called “shunting” which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with spina bifida live well into adulthood as a result of today’s sophisticated medical techniques.

Lipo

The fatty mass that covers the protruding spinal cord and nerves.

Myelomeningocele (meningomyelocele)

This is the commoner of the two meningoceles and also the most serious. Here the sac or cyst not only contains tissue and cerebro-spinal fluid but also nerves and part of the spinal cord. The spinal cord is damaged or not properly developed. As a result, there is always some degree of paralysis and loss of sensation below the damaged vertebrae. The amount of disability depends very much on where the spina bifida is and the amount of nerve damage involved. Many children and adults with this condition experience problems with bowel and bladder control.

Occulta

Hidden, beneath the skin, beneath the fatty mass.  Not obviously sticking out from an open site of the back. Covered. (for our specific case, for others, occulta means really hidden, there is no sign of spina bifida until problems arise and an xray or some other testing is done and the problem is noticed)

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This is a blog that tells our story.  From her birth to diagnosis, surgeries and recovery, day to day milestones and setbacks. Here is where I’ll chart our journey to hopefully be a light and encouragement to others finding themselves faced in similar predicaments.

This may not be the journey we would have chosen, if given a choice, but this is where we are and we will make the most of it and glorify God all the while.  For He is still good and worthy of praise.  And our little girl may have Spina Bifida, but she is still our beautiful little blessing who deserves much love. 🙂

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