Childhood onset 5q SMA affects each child differently and its impact varies greatly. When your child’s medical team is discussing and deciding with you what's the best care and management for your child, they think not only about your child’s ‘clinical classification’ (such as SMA Type 1, 2 or 3), but also what physical milestones your child has reached. For simplicity, these milestones are sometimes used to group children as:

  • non-sitters - those who are unable to sit
  • sitters - those who are able to sit but not walk
  • walkers – those who are able to walk 

Impact Of SMA On Breathing

The muscle weakness caused by SMA can affect the muscles for breathing. Breathing problems may be common for children who are ‘non-sitters’ (usually diagnosed with SMA Type 1) and children who are ‘sitters’, but they're rare for children who are ‘walkers’. 

Management and Care

There are different ways of helping to manage these breathing challenges. When your child’s medical team is discussing and deciding with you what might be needed for your child, their reference and yours will be Chapter 6 Breathing (Respiratory and Pulmonary Care) of the family-friendly Guide to the 2017 International Standards of Care for SMA 
This is for those with 5qSMA (Types 1, 2, 3 or 4).

Respiratory - Cough Assist for Younger Children

SMA UK Host Martyn Sibley talks to Lisa Edel (Specialist Respiratory Physiotherapist - Great Ormond Street Hospital for Children NHS Foundation Trust) to share some of the latest information and insights around cough assist for younger children. 
Recorded: Feb 2021

Non-Invasive Ventilation for Younger Children

Dr Elaine Chan (Consultant Respiratory Paediatrician) and Gary Rendle (Non-Invasive Ventilation Clinical Nurse Specialist) from GOSH talk to Martyn Sibley about non-invasive ventilation for young children, including the potential benefits, why it might be needed and assessments involved. They also look at a machine and explain how it works. Recorded: Feb 2021

You may also find helpful information in whichever of the following SMA UK ‘Looking after your child...’ guides is the ‘best fit’ for your child (see below).

Last reviewed / updated: August 2021
Next review due: August 2022