Special Needs
Spina Bifida diagnosis
I haven't posted on this part of the site before, but we just found out yesterday at our 18 week U/S that our daughter (!) has Spina Bifida. We have had a rough 24 hours digesting what that means and are looking for any help to website and book etc that any of you may know. I know we will not know the extent of this until she is born, but I'd like to get some knowledge behind me before that...
Thank you most sincerely,
Jen
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Re: Spina Bifida diagnosis
Congrats on your baby girl! Many of us have been in your same situation in finding out something was not right with the baby in utero. I don't have information about spina bifida, but just wanted to know that you are not alone. Many of us on this board are going through this or have gone through this, just with a different diagnosis.
You are very smart in starting to research spina bifida so that you have as much info as you can to be the best advocate for your daughter. It is much easier to research and digest before she is here! Also, be careful what you read on the internet, as usually only the "bad" things are written. It is hard with spina bifida because there is such a wide range. I am a teacher and have had a few in my class over the years.
I wish you the best and will keep you in my thoughts and prayers. Just know you can come here to vent or ask questions...the mommas on this board are wonderful!
Overview Myelomeningocele is a birth defect in which the backbone and spinal canal do not close before birth. The condition is a type of spina bifida.
Symptoms A newborn may have a sac sticking out of the mid to lower back. The doctor cannot see through the sac when shining a light behind it. Symptoms include: Loss of bladder or bowel control Partial or complete lack of sensation Partial or complete paralysis of the legs Weakness of the hips, legs, or feet of a newborn
Other symptoms may include: Abnormal feet or legs, such as clubfoot Build up of fluid inside the skull (hydrocephalus) Hair at the back part of the pelvis called the sacral area Dimpling of the sacral area Treatment Genetic counseling may be recommended. In some cases where severe defect is detected early in the pregnancy, a therapeutic abortion may be considered.
After birth, surgery to repair the defect is usually recommended at an early age. Before surgery, the infant must be handled carefully to reduce damage to the exposed spinal cord. This may include special care and positioning, protective devices, and changes in the methods of handling, feeding, and bathing.
Children who also have hydrocephalus may need a ventricular peritoneal shunt placed. This will help drain the extra fluid. Antibiotics may be used to treat or prevent infections such as meningitis or urinary tract infections. Most children will require lifelong treatment for problems that result from damage to the spinal cord and spinal nerves. This includes: Gentle downward pressure over the bladder may help drain the bladder. In severe cases, drainage tubes, called catheters, may be needed. Bowel training programs and a high fiber diet may improve bowel function. Orthopedic or physical therapy may be needed to treat musculoskeletal symptoms. Braces may be needed for muscle and joint problems. Neurological losses are treated according to the type and severity of function loss. Follow-up examinations generally continue throughout the child's life. These are done to check the child's developmental level and to treat any intellectual, neurological, or physical problems. Visiting nurses, social services, support groups, and local agencies can provide emotional support and assist with the care of a child with a myelomeningocele who has significant problems or limitations.
Causes Normally, during the first month of a pregnancy, the two sides of the spine (or backbone) join together to cover the spinal cord, spinal nerves and meninges (the tissues covering the spinal cord). Spina bifida refers to any birth defect involving incomplete closure of the spine. Myelomeningocele is the most common type of spina bifida. It is a neural tube defect in which the bones of the spine do not completely form, resulting in an incomplete spinal canal. This causes the spinal cord and meninges (the tissues covering the spinal cord) to stick out of the child's back. Myelomeningocele may affect as many as 1 out of every 800 infants. The rest of myelomeningocele cases are most commonly: Spina bifida occulta, a condition in which the bones of the spine do not close but the spinal cord and meninges remain in place and skin usually covers the defect Meningoceles, a condition where the tissue covering the spinal cord sticks out of the spinal defect but the spinal cord remains in place. Other congenital disorders or birth defects may also be present in a child with myelomeningocele. Hydrocephalus may affect as many as 90% of children with myelomeningocele. Other disorders of the spinal cord or musculoskeletal system may be seen, including syringomyelia and hip dislocation. The cause of myelomeningocele is unknown. However, low levels of folic acid in a woman's body before and during early pregnancy is thought to play a part in this type of birth defect. The vitamin folic acid (or folate) is important for brain and spinal cord development. Also, if a child is born with myelomeningocele, future children in that family have a higher risk than the general population. However, in many cases, there is no family connection. Some theorize that a virus make play a role, since there is a higher rate of this condition in children born in the early winter months. Research also indicates possible environmental factors such as radiation.
Sorry double posted =(
BFP 3/9/12 Natural M/C 4/11/12
My daughter has a form of spina bifida called lipomyelomeningocele meaning that the spinal cord is tethered to a mass of fat in the back. The diagnosis code falls under the same one as myelomeningocele. She had surgery a little over a year ago to correct it.
We were treated at UVa by Dr. Jane Jr., but with you being in NC, Duke's Children's Hospital is one of the top, if not the top, spina bifida hospital to see. I would try to get in with one of them ASAP. Also, there are groups on Yahoo with moms of children with these diagnoses. The one that I belong to is listed as LMC-TCS and you would be more than welcome as children with MMC (myelomeninigocele) almost always have a tethered spinal cord as well. Many of the patients travel a good distance to be seen by the Duke doctors.
I know that this news must seem awfully difficult to handle right now. Please feel free to send me a PM and I will be happy to share my email address with you and we can chat more. I promise you will get through this, even if it is one day at a time.