General

Mindfulness, Meditation, and Coping with Anxiety and Depression



Q: Do you know what type of technology is available that condenses all of my child's medical history so we do not have to pay for films and carry huge files?

A: Because Spina Bifida is such a complex medical condition affecting so many different parts of the body, there is a considerable amount of medical information that rapidly accumulates. Personal health records are now available in many formats.
The National Center for Medical Home Initiatives for Children with Special Health Care Needs has a section on their Web site for creating care notebooks. These notebooks are not Spina Bifida specific, but can be tailored to the family's needs.

For more guidance about creating a personal health record and for a list of software programs and internet sites that offer free and for purchase personal health records, go the The American Health Information Management Association (www.myPHR.com) and select " Tools and Resources " followed by " PHR Tools and Services “. More information on what to include can also be found in the Health Guide for Parents of Children Living with Spina Bifida.

 

Q: Is there a technique used at birth to lessen Spina Bifida?

A: Spina Bifida is not caused by anything that occurs during the birthing process. It is a fetal development problem that occurs within the first month of pregnancy, so the fetus will have already developed Spina Bifida before the delivery process. However, there are things the delivery team can do to lessen complications during the birthing process. The optimal delivery team is a high-risk pregnancy specialist with experience managing a Spina Bifida pregnancy. Babies with myelomeningocele, when part of the spinal cord is outside the skin, are usually delivered by C-section to decrease the trauma to the exposed nerve tissue. Once the baby is delivered, she is wrapped in a protective covering and often started on antibiotics to decrease the chance for infection. The baby then goes to surgery to get the exposed nerve tissue covered by a skin layer. These babies are best cared for in intensive care nurseries in hospitals with on-staff neurosurgeons, urologists, and orthopedic doctors who have experience treating newborns with Spina Bifida. If you know you are carrying a baby with this condition, discuss with your obstetrician your options for meeting with these specialists before your baby is born.

For more information, review SBA’s health information sheet on women’s health issues.