Spina bifida is a birth defect that involves the incomplete development of the spinal cord or its coverings.
Spina bifida occurs at the end of the first month of pregnancy when the two sides of the embryo’s spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the back. The condition usually is detected before a baby is born and treated right away. The causes of spina bifida are largely unknown.
The type of Spina Bifida Mia has is Myelomeningocele T2-L1 - this is the most severe form of spina bifida. It occurs when the meninges push through the hole in the back, and the spinal cord also pushes though. Most babies who are born with this type of spina bifida also have hydrocephalus, an accumulation of fluid in and around the brain.
Because of the abnormal development of and damage to the spinal cord, a child with myelomeningocele typically has some paralysis. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening is on the back, the more severe the paralysis tends to be.Babies with myelomeningocele also have a sac-like mass that bulges from the back, but a layer of skin may not always cover it. In some cases, the nerves of the spinal cord may be exposed. A baby who also has hydrocephalus will have an enlarged head, the result of excess fluid and pressure inside the skull.
Babies with myelomeningocele need more immediate attention and often have surgery within the first 1 to 2 days after birth. During this first surgery, doctors push the spine back into the vertebrae and close the hole to prevent infection and protect the spine.
A baby who also has hydrocephalus will need an operation to place a shunt in the brain. The shunt is a thin tube that helps to relieve pressure on the brain by draining and diverting extra fluid. In addition, some children need subsequent surgeries to manage problems with their feet, hips, or spine.
The location of the gap in the back often dictates what kind of adaptive aids or equipment a child with myelomeningocele will need. Those with a gap high on the spinal column and more extensive paralysis often need to use a wheelchair, while those with a gap lower on the back may be able to use crutches, leg braces, or walkers.
Parents of children with spina bifida receive support from a medical team that may include several doctors (such as neurosurgeons, urologists, orthopedic surgeons, rehabilitation specialists, and general pediatricians), a nurse practitioner, physical and occupational therapists, and a social worker.
Mia also has a very serious condition called Arnold Chiari 11 Malformation there is an explanation of what this is in her blog. She also has seizures, sensory issues, and CVI (cortical vision impairment). All these conditions can shorten Mia’s life …one never knows what each day brings.