Spina Bifida: Your Baby's First Days

Описание к видео Spina Bifida: Your Baby's First Days

Learning that your baby will be born with spina bifida can be an overwhelming experience. This video goes over what to expect during their first few days of life. http://chop.edu/spinabifida

From transfer to the neonatal intensive care unit (NICU) and the care provided by neonatologists, to postnatal surgery to close the spina bifida defect, babies born with spina bifida require carefully coordinated multidisciplinary care from the moment of birth.

In this video, clinicians from Children’s Hospital of Philadelphia who specialize in treating children with spina bifida talk about every step in your baby’s care. You’ll hear from Natalie Rintoul, MD, Gregory Heuer, MD, PhD, David Horn, MD, Stephen Zderic, MD, and Danielle D’Amico, RN.

They talk about what will typically happen while your baby is in the NICU, what to expect during surgery to close the opening in the back, and what recovery will be like. An important part of recovery is monitoring for hydrocephalus, a buildup of spinal fluid in the brain that leads to increased pressure in the baby’s head. In some cases, babies may require a shunt to relieve the pressure.

Many different specialists will be involved in the care of babies born with spina bifida, including neonatologists, neurologists, neurosurgeons, urologists, orthopedists, physical therapists, nurses, advanced practice nurses and more.

After spina bifida closure, evaluations with urology, orthopaedics and physical therapy will help to determine appropriate follow-up care.

Urology will perform frequent bladder scans to monitor your child’s bladder and kidney function and monitor for complications like bladder distension and urinary tract infections. Many children with spina bifida will require clean intermittent catheterization, where a flexible tube called a catheter is placed to empty the bladder of urine. A video urodynamic study is performed several times over the course of early childhood to determine need for catheterization.

Orthopaedic and physical therapy evaluations look your baby’s bones, joints and muscles to assess for any other related conditions and come up with a treatment strategy. Related conditions might include scoliosis, hip dysplasia, knee problems like knee hyperextension, or club foot. Follow-up care might include serial casting to treat club feet, braces, orthotics, physical therapy to loosen up tight joints and help with walking, and whatever else your child might need.

Parent education is an important element to help with the transition home and long-term care. Neonatal nurses and nurse coordinators play an important role in helping answer parents’ questions, communicating with pediatricians and insurance companies, and managing your transition home to prepare for the ongoing care your baby will need after leaving the hospital.

After the first few days and weeks, children can benefit from being followed by a coordinated Spina Bifida Program to help manage long-term care.

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