Key points
- Care is best delivered by a multidisciplinary team — with parents as key members.
- The goal is to prevent hospital stays and manage SMA through regular out-patient care.
- Five areas matter most — diagnosis, breathing, nutrition, movement and preparing for illness.
The Consensus Statement for Standard of Care in SMA was developed by an international group of experts in the care of people with SMA. It is a resource for healthcare professionals, with recommendations on current treatments. These are suggestions to discuss with your medical team — not absolute requirements.
There is a lot you can do to keep your child with SMA comfortable and safe, and to help them learn and grow to their fullest capacity. SMA experts recommend five key areas for discussion with your doctors and therapists.
A multidisciplinary team
Care for children with SMA is best provided by a team: a paediatrician, neurologist, orthopaedic surgeon, pulmonologist, dietician and physiotherapist, and where needed a child psychologist and genetic counsellor. The goal of good SMA care is to prevent hospitalisation and manage as much as possible through regular out-patient visits. Our SMA clinics bring these specialists together.
1. Confirming the diagnosis
- If SMA is suspected, ask for a blood test to confirm or rule it out.
- If SMA is confirmed, talk to your doctor or a genetic counsellor about what it means for your family.
- Learn about the medical problems associated with SMA, and work with your team on a personalised care plan.
More: Diagnosis & testing
2. Managing breathing
Breathing problems are the number one cause of illness in SMA, and the most common cause of death in children with Type 1 and Type 2.
- See a pulmonologist familiar with SMA as soon as possible after diagnosis, to evaluate breathing and the ability to cough.
- Depending on severity, cough-assist devices and non-invasive ventilation such as BiPAP may help.
- Keep routine immunisations and flu shots up to date.
- Agree care plans both for preventing problems and for acute illness such as a cold or flu.
More: Breathing
3. Managing eating and nutrition
People with SMA can be under- or over-nourished, and both affect quality of life.
- Monitor growth on a growth chart and agree a personalised feeding plan.
- Talk to your team about trouble swallowing, reflux or constipation.
- Watch for eating or digestive problems and plan to prevent aspiration pneumonia.
More: Nutrition
4. Managing movement and daily activities
Muscle weakness varies from person to person. Care plans for the arms, legs, trunk and neck help each person reach their highest level of function and independence.
- Develop a therapy plan with physiotherapists, occupational therapists, speech therapists and rehabilitation specialists.
- Consider assistive devices, tools and exercise to support breathing, eating, work and play.
- Consider devices that help slow or prevent spinal curvature (scoliosis).
- Have regular check-ups with an orthopaedic doctor.
More: Physiotherapy & mobility
5. Preparing for illness
Caring for a child with SMA adds complexity to family life. With your medical team, you will talk about daily care, prevention and what to do in an emergency.
- Planning is the single most important thing you can do to prevent a medical emergency. Discuss care options and their consequences for your child and family.
- Share your plans and goals with every healthcare professional involved in your child’s care.
- Keep a notebook or folder with current treatment plans and your decisions about critical care, to help you and the hospital in an emergency.
Parents are key members of the care team and are encouraged to take part as much as possible. You and your medical team are the best people to decide what is right for your child.