Congratulations on your New Baby!
Having a new baby is an exciting and challenging time. New parents often feel many different emotions―such as love, joy, happiness, worry, and exhaustion. The same is true for parents who have a child affected by spina bifida and/or hydrocephalus. However, in addition to adjusting to life with a new baby, parents of a child with spina bifida and/or hydrocephalus also need to learn as much as possible about the condition to prepare for the needs of their child.
Spina bifida and/or hydrocephalus will not be the only interesting thing about your baby during this time. Your life will be filled with the same delight and difficulties that are part of raising all children. Make use of our organization for support, information and for connection to others going through the same journey as you. We can also link you with other families who have a child with spina bifida and/or hydrocephalus. More detailed information for all stages of your child’s development is also available through our Association. In time, you will become the “expert” about how this condition affects your child.
Congratulations on your new baby!
SBHANA offers a binder with information for new parents of babies with spina bifida and/or hydrocephalus. We’ve summarized that information on this page, but encourage you to download or request a print copy of this document for more robust and personalized information.
SBHANA Membership
The Spina Bifida and Hydrocephalus Association of Northern Alberta (SBHANA) now offers a free first year of membership to all new parents of children born with spina bifida. We do not receive the names of the families who receive our gift bag and therefore are unable to add you to our membership list without you contacting us. SBHANA membership includes:
About us
The Spina Bifida and Hydrocephalus Association of Northern Alberta (SBHANA) was formed over 40 years ago in Edmonton, Alberta to provide support for families with children with spina bifida and/or hydrocephalus. Today the Association has staff members who can assist families to obtain the sort of services they will require as their child grows from babyhood to adulthood.
What is
Spina BiFida?
Spina bifida is a congenital neural tube defect (NTD) where the spinal cord’s protective covering fails to close properly during early development, causing physical and neurological issues. Symptoms vary based on the location and size of the spinal opening. There are three main types: spina bifida occulta, meningocele, and myelomeningocele, each with varying severity and complications.
What is Hydrocephalus?
Hydrocephalus is a common complication associated with spina bifida, particularly in individuals with the more severe form known as myelomeningocele. In spina bifida, the neural tube fails to close properly during embryonic development, leading to an opening in the spine. This opening allows the spinal cord and its surrounding structures to protrude through the back. The majority of individuals with myelomeningocele also experience hydrocephalus.
Your
Medical Team
Your child will be supported by a diverse team of medical professionals. Some prominent team members will include:
Physiotherapy
You will have a physiotherapist at the Glenrose Clinic who will help you with physical therapy for your child. Your therapist will also help you to access the equipment needed to assist your child to be mobile.
Occupational Therapy
At the clinic, your child will have an occupational therapist who will help with upper extremity function. Your therapist will also help you access equipment to make your home more accessible for your child.
Neurosurgery
Your child will undergo evaluation by a neurosurgical specialist, who specializes in surgical procedures involving the brain and nervous system. Common neurological assessments your child may undergo include an MRI, a CT scan, and a series of x-rays to assess shunt placement.
Neurosurgery Nurse Practitioner
The Neurosurgery Nurse Practitioner at Stollery Children’s Hospital plays a vital role in the healthcare team, specializing in providing personalized care to pediatric patients with spina bifida and hydrocephalus. As a skilled and compassionate professional, the Nurse Practitioner collaborates with neurosurgeons and other healthcare providers to ensure comprehensive and individualized care for children and adolescents with these conditions.
Urology
Your child will be followed by the Pediatric Urologists and Pediatric Urology Nurse Practitioner at the Spina Bifida Clinic as well as at the Stollery Urology Clinics. The Pediatric Urologists and the Pediatric Nurse Practitioner monitor how your child’s bladder and kidneys are working and may make changes to your child’s care, based on how your child has been doing over the past year, renal ultrasound results and urodynamic studies.
Pediatric Urology Nurse Practitioner
Your child will receive ongoing care from a Pediatric Urology Nurse Practitioner at both the Glenrose Spina Bifida Clinic and the Stollery Urology Clinics. The Pediatric Urologists and Nurse Practitioner closely monitor your child’s bladder and kidney function, and they may adjust your child’s treatment plan based on their progress over the past year, results from renal ultrasounds, and urodynamic studies.
Community Resources
Having support and community resources can help increase confidence in managing spina bifida and/or hydrocephalus, enhance quality of life, and assist in meeting the needs of all family members. There are many programs set up to help with you and your child’s quality of life.
Alberta Aids to Daily Living (AADL)
The AADL program helps Albertans with a long-term disability, chronic illness or terminal illness to maintain their independence at home, in lodges or group homes by providing financial assistance to buy medical equipment and supplies.
This service provides things like walkers, diapers, limb braces , specialized seating, catheters, wound and ostomy supplies etc. Each year you pay a maximum of $500 for your needs. You may qualify for cost share exemption (permanent or temporary based on your income or other extenuating circumstances.)
Family Support for Children with Disabilities (FSCD)
The Family Support for Children with Disabilities (FSCD) Program provides a broad range of proactive and family-centered supports that assist families to care for and promote the healthy growth and development of their child with a disability.
This resource is notably important. Take the time to fill out the paperwork or have a social worker help you. You do need to have a confirmed diagnosis for your child. This program offers assistance for respite care, shoes, homemaking, mileage, parking, and other services.
Health Link Alberta
This is a 24 hour, 7 day a week province wide nurse telephone advice and health information service. Dial 811. If your child is sick and you are calling for health advice you must be with your child so they can do an assessment with you over the phone.
Residential Rehabilitation Assistance Program – RRAP for Persons with Disabilities
The Residential Rehabilitation Assistance Program – RRAP for Persons with Disabilities offers financial assistance to allow homeowners and landlords to pay for modifications to make their property more accessible to persons with disabilities.
More Resources
SBHANA has curated many mote resources for those impacted by Spina Bifida and Hydrocephalus. These resources highlight the many opportunities for community and support available to you. If you would like more information or specific recommendations, please contact us at
