Showing posts with label shunts. Show all posts
Showing posts with label shunts. Show all posts
September 23, 2007
Pediatric Neurosurgeon Visit
Another of our many appointments that we have had the last few weeks. This doctor would do the surgery on Whitney should we decide to stay here. His name is Dr. Stanly Skarli and a partner with Dr. Foody. They are connected with the DeVos Children's Hospital and come highly recommended. The first surgery she will have will be to cover the exposed part of her spinal cord in the first fews days after birth. We also learned that there is a strong likelihood that Whitney will need a shunt at some point due to her hydrocephalus. We were thankful for his straightforwardness with us but also obviously disappointed. (Shunts drain fluid off the brain) We learned that once a shunt is surgically implanted that you will need one for life. Also, that they need to be switched periodically for adjustments (child grows out of them), infections, malfunctions, and other complications. It looks as though our little one has many surgeries in her future.
September 21, 2007
Spina Bifida
We have had a number of people ask us what spina bifida is, so this post is in response to those questions. The short answer is in the first paragraph. A much more technical answer follows.
Spina bifida is a birth defect that occurs early in a baby's development. As a baby forms in the womb, the vertebrae fold over the spinal cord to create the spine. Spina bifida occurs when the vertebrae do not fold together, leaving a gap in the spine where the spinal cord is exposed. Spina bifida literally means "split spine."
What causes spina bifida?
The medical community still does not fully know what causes spina bifida, but there is research showing that folic acid helps prevent neural tube defects like spina bifida. In our case, Susan was taking prenatal vitamns that include the necessary daily allowance of folic acid since we learned that she was pregnant with Fiona in Septmber 2005. So the lack of folic acid is not the only cause. There is also some genetic component to spina bifida, but to our knowledge, none of our relatives have spina bifida. The mystery of how Whitney developed spina bifida is one of our frustrations.
Types of spina bifida
There are three kinds of spina bifida. Spina bifida occulta occurs when a vertebrae does not fully close, but the spinal cord does not protrude. Spina bifida occulta apparently occurs in 3-5% of the population, many times without people knowing it. Meningocele spina bifida is much more rare, and occurs when the protective coatings of the spine (meninges) come through the opening in the spine. The most severe form of spina bifida is myelomeningocele (mī′ĕ-lō-mĕ-ning′gō-sēl) spina bifida which occurs in a little less than 1 in 1,000 births.
Myelomeningocele spina bifida occurs when a portion of the spinal cord is undeveloped, the overlying vertebrae are not fully formed, and there is no skin covering the open bones or spinal cord. This can occur anywhere along the spine, but is most common in the lower portions of the spine. The spinal cord protrudes from this opening into a neural pouch out of the baby's back. This protrusion is called a lesion. Pediatric neurosurgeons typically operate to close the lesion within 72 hours of birth. Whitney's lesion extends from the third lumbar vertebrae to the first sacral vertebrae--roughly the area of her lower back around the waistline.
Effects of spina bifida
Unfortunately, spina bifida is a complicated disorder that affects numerous body and brain functions. Here are the basics, but we are both relieved and anxious because we don't know the full effects of Whitney's spina bifida on her, and won't know for years.
Effects on lower body
The spinal cord below the lesion typically does not develop properly, so body functions controlled by the nerves at or below this level in the spine are affected. Typically, people with myelomeningocele have progressively more difficulty with bladder control, bowel function, and lower body movement based upon the location and severity of the spinal cord injury. In practical terms, we expect that Whitney will have some degree of paralysis from the waist down.
The information we have seen suggests that Whitney will likely be able to walk with full leg braces. We were initially very encouraged by this, but after attending a recent event with families with children with spina bifida, we learned that Whitney will probably need a wheelchair for her entire life. That said, we praised the Lord after seeing how mobile these kids with spina bifida are. Some of them even play tennis and hockey.
Effects on the brain
In people with spina bifida, the brain is positioned further down into the spinal column than it should be. This is called Arnold Chiari II malformation. This malformation prevents spinal fluid from circulating around the brain. Fluid becomes trapped in the ventricles in the brain, increasing the pressure on the brain. This abnormal collection of fluid is called hydrocephalus or "water on the brain." Around 85% of people with myelomeningocele spina bifida require a shunt to relieve the pressure. The shunt is surgically implanted in the head with a portion that extends into the ventricles inside the brain. The shunt drains spinal fluid into the abdominal cavity. Shunts are likely going to be one of the biggest problems for Whitney.
Effects on learning
Children with spina bifida tend to have slightly lower IQs than the general public and have some learning problems. From what we've gathered, people with spina bifida tend to have significantly better verbal than mathematical skills. Some people also have poor short term memory and poor organization skills.
We have been told that many children with spina bifida are exceptionally extroverted and have very pleasant personalities. We are praying that the Lord will bless Whitney and her family in this way.
Related medical issues
Latex allergies: children with spina bifida are at a high risk for developing allergies to natural rubber. When you consider all the surgeries that these children tend to have, you quickly see how big a problem latex allergies can be. We'll have a nice sign for Whitney's bassinet saying "NO LATEX."
Bone fractures: because people with spina bifida do not bear weight fully on their legs, their leg bones may become thin and easy to break. People with spina bifida also frequently have problems with dislocated and degenerating hips.
Seizures: about 1 in 20 people with spina bifida tend to experience seizures, compared to 1 in 100 for the general population.
Eye problems: people with spina bifida may develop lazy eye. If lazy eye is not treated early, it can become permanent.
Spina bifida is a birth defect that occurs early in a baby's development. As a baby forms in the womb, the vertebrae fold over the spinal cord to create the spine. Spina bifida occurs when the vertebrae do not fold together, leaving a gap in the spine where the spinal cord is exposed. Spina bifida literally means "split spine."
What causes spina bifida?
The medical community still does not fully know what causes spina bifida, but there is research showing that folic acid helps prevent neural tube defects like spina bifida. In our case, Susan was taking prenatal vitamns that include the necessary daily allowance of folic acid since we learned that she was pregnant with Fiona in Septmber 2005. So the lack of folic acid is not the only cause. There is also some genetic component to spina bifida, but to our knowledge, none of our relatives have spina bifida. The mystery of how Whitney developed spina bifida is one of our frustrations.
Types of spina bifida
There are three kinds of spina bifida. Spina bifida occulta occurs when a vertebrae does not fully close, but the spinal cord does not protrude. Spina bifida occulta apparently occurs in 3-5% of the population, many times without people knowing it. Meningocele spina bifida is much more rare, and occurs when the protective coatings of the spine (meninges) come through the opening in the spine. The most severe form of spina bifida is myelomeningocele (mī′ĕ-lō-mĕ-ning′gō-sēl) spina bifida which occurs in a little less than 1 in 1,000 births.
Myelomeningocele spina bifida occurs when a portion of the spinal cord is undeveloped, the overlying vertebrae are not fully formed, and there is no skin covering the open bones or spinal cord. This can occur anywhere along the spine, but is most common in the lower portions of the spine. The spinal cord protrudes from this opening into a neural pouch out of the baby's back. This protrusion is called a lesion. Pediatric neurosurgeons typically operate to close the lesion within 72 hours of birth. Whitney's lesion extends from the third lumbar vertebrae to the first sacral vertebrae--roughly the area of her lower back around the waistline.
Effects of spina bifida
Unfortunately, spina bifida is a complicated disorder that affects numerous body and brain functions. Here are the basics, but we are both relieved and anxious because we don't know the full effects of Whitney's spina bifida on her, and won't know for years.
Effects on lower body
The spinal cord below the lesion typically does not develop properly, so body functions controlled by the nerves at or below this level in the spine are affected. Typically, people with myelomeningocele have progressively more difficulty with bladder control, bowel function, and lower body movement based upon the location and severity of the spinal cord injury. In practical terms, we expect that Whitney will have some degree of paralysis from the waist down.
The information we have seen suggests that Whitney will likely be able to walk with full leg braces. We were initially very encouraged by this, but after attending a recent event with families with children with spina bifida, we learned that Whitney will probably need a wheelchair for her entire life. That said, we praised the Lord after seeing how mobile these kids with spina bifida are. Some of them even play tennis and hockey.
Effects on the brain
In people with spina bifida, the brain is positioned further down into the spinal column than it should be. This is called Arnold Chiari II malformation. This malformation prevents spinal fluid from circulating around the brain. Fluid becomes trapped in the ventricles in the brain, increasing the pressure on the brain. This abnormal collection of fluid is called hydrocephalus or "water on the brain." Around 85% of people with myelomeningocele spina bifida require a shunt to relieve the pressure. The shunt is surgically implanted in the head with a portion that extends into the ventricles inside the brain. The shunt drains spinal fluid into the abdominal cavity. Shunts are likely going to be one of the biggest problems for Whitney.
Effects on learning
Children with spina bifida tend to have slightly lower IQs than the general public and have some learning problems. From what we've gathered, people with spina bifida tend to have significantly better verbal than mathematical skills. Some people also have poor short term memory and poor organization skills.
We have been told that many children with spina bifida are exceptionally extroverted and have very pleasant personalities. We are praying that the Lord will bless Whitney and her family in this way.
Related medical issues
Latex allergies: children with spina bifida are at a high risk for developing allergies to natural rubber. When you consider all the surgeries that these children tend to have, you quickly see how big a problem latex allergies can be. We'll have a nice sign for Whitney's bassinet saying "NO LATEX."
Bone fractures: because people with spina bifida do not bear weight fully on their legs, their leg bones may become thin and easy to break. People with spina bifida also frequently have problems with dislocated and degenerating hips.
Seizures: about 1 in 20 people with spina bifida tend to experience seizures, compared to 1 in 100 for the general population.
Eye problems: people with spina bifida may develop lazy eye. If lazy eye is not treated early, it can become permanent.
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