Guiding the Nurture of Young Ones aged 2 and below, Stricken with Spinal Muscular Atrophy
Caring for a Child with Spinal Muscular Atrophy: A Guide for Caregivers
Spinal Muscular Atrophy (SMA) is a complex condition that requires a multidisciplinary approach for proper care. Here's a breakdown of the key members of a comprehensive care team for a child with SMA.
At the helm of the care team is the neurologist, often the first specialist referred when symptoms of SMA appear. They manage the diagnosis, treatment, and coordinate the multidisciplinary team. A pediatrician, specialized in managing a wide variety of childhood health conditions, contributes to ongoing care and monitors development, which may be different due to SMA.
A respiratory physician monitors breathing ability and helps manage breathing problems, susceptibility to respiratory infections, and provides support for respiratory care. Nurses in neuromuscular clinics serve as primary experts and care coordinators, managing care plans, evaluating health, monitoring progress, and providing advice and emotional support.
Allied health therapists play a crucial role. Physiotherapists help preserve and adapt motor movements, while occupational therapists assist with adaptive technologies and modifications. Speech therapists support communication if needed. A dietitian tailors the child's diet to promote growth and minimize muscle wasting. An orthopaedic surgeon treats conditions affecting bones, joints, etc., such as scoliosis or joint instability due to muscle wasting.
Genetic counsellors provide information on genetic risks and support for family planning. General practitioners (GPs) often act as the first point of contact for families seeking diagnosis and care, coordinating referrals to specialists as needed.
The neurologist serves as the leader of the care team, understanding the disease process as a whole, helping with genetic testing, and being knowledgeable about available SMA treatments and clinical trials. Pediatric neurologist Alexandra Bonner provides tips for caring for a child with SMA, reassuring caregivers that they will not be alone in this journey, as their provider team and support network will ensure everyone is on track and address condition management issues as they arise.
Dr. Bonner urges SMA caregivers to protect their children against infectious diseases by being up to date on vaccinations, limiting exposure to other people in their earliest months, practicing good hand hygiene, adopting immune system-boosting behaviors, and going to the doctor at the first sign of illness.
Physical, occupational, and speech therapy should be engaged in conversations about supporting a child's cognitive development. When a child with SMA is sick, it's important to have a plan for respiratory support, and to ensure that the pulmonary team knows the patient ahead of time. Safety concerns should be assessed for children with SMA, especially regarding positioning and safe sleep.
Dr. Bonner suggests joining online support groups endorsed by major medical institutions or nonprofit organizations like Cure SMA and The Muscular Dystrophy Association. Bouncer seats, swings, and pillows should be avoided for children with SMA due to potential breathing difficulties.
Babies and toddlers with SMA may have difficulty learning through conventional methods due to motor development issues. Dr. Bonner recommends that SMA caregivers contact their local board of developmental disabilities for assistance with financial support, healthcare issues, educational interventions, and legal protections.
In conclusion, caring for a child with SMA requires a dedicated team effort. By understanding the roles of each team member and staying proactive in monitoring cognitive development, caregivers can provide the best possible care for their child.
