Spinal Muscular Atrophy (SMA): what it means for you and your child

Inspiration to write this article came off the back of another recent article we published around how to avoid burnout in working parents. This article evoked responses about individual experiences of parent burnout in the workplace. One comment centred on the experience of a working father caring for his child with spinal muscular atrophy (SMA). Sadly, his employer’s rigidity and lack of understanding for the demands on him as a working parent of a child with severe disability and life-limiting condition meant that he was forced to leave.

As such, at Bloss, we want to raise the profile of spinal muscular atrophy and what it means from a working parent’s perspective. This information should help parents of a baby or child with spinal muscular atrophy, particularly in the context of managing working life.

SMA children’s disease

Spinal Muscular atrophy is a rare genetic condition. Muscles are weaker and people with SMA experience problems with movement. Worsening over time, spinal muscular atrophy is a serious condition. There are several different types of SMA and when symptoms appear can vary. However, there are a number of common symptoms associated with SMA:

• Floppy or weak arms and legs.
• Difficulties with movement, including walking and sitting upright.
• Bone and joint concerns, including scoliosis (curved spine).
• Difficulties swallowing.
• Respiratory difficulties.

Spinal muscular atrophy does not affect people cognitively; it doesn’t cause learning difficulties.

There are four main types of spinal muscular atrophy and the symptoms can begin at different ages. 

• Type 1: Spinal muscular atrophy that develops in a baby under six months is the severest type of SMA children’s disease.
• Type 2: This appears in babies aged seven-18 months and is less severe than Type 1.
• Type 3: Children who develop spinal muscular atrophy after 18 months have Type 3 which is the least severe type of SMA in children.
• Type 4: A mild form of SMA that affects adults. 

The earlier someone develops SMA, the more their motor function is affected.

As SMA is a genetic disease, it may be advisable for those with a family history of SMA to undertake genetic counselling when considering future fertility decisions. There are tests that can be done to establish the genetic risk, and also tests in pregnancy to see if the baby will be born with SMA.

What does a diagnosis of spinal muscular atrophy mean?

Not too long ago, a baby diagnosed with Type 1 SMA rarely survived beyond their second birthday. While it remains a serious and life-limiting condition, earlier diagnosis and treatment is extending lifespan.

A child diagnosed with Type 2 SMA typically survives into adulthood with a high quality of life. Those with a diagnosis of Type 3 or 4 do not usually have reduced life expectancy.  

For parents receiving a diagnosis of SMA for their baby or child, it is understandably a worrying and distressing time. 

The diagnosis timing determines much about how the condition will affect your child. However, for all babies and children with SMA, their parents of course want to do as much as they can to help. A childhood with a SMA diagnosis is therefore often characterised by hospital appointments, fittings (for example for specialist equipment) and processes to access assistance, help and support. Babies and children with SMA require more time and financial input and this can be very difficult for parents to adjust to and navigate. 

Treatments for spinal muscular atrophy

Unfortunately, spinal muscular atrophy cannot be cured. However, treatments are developing and support is available. At present, treatment focuses on managing symptoms and supporting children with SMA, and their families, to have the best quality of life possible. 

SMA treatment for children usually includes movement and breathing exercises and equipment, nutritional support including feeding tubes and dietary advice. As well as this, surgery and braces can sometimes be beneficial to treat developing problems with the spine and particular joints. 

As such, parents will find that they see a huge range of healthcare practitioners throughout their child’s development. Combined with the additional support a child with SMA needs, the demands on parents are immense. Employers need to understand this, so that they can best support their staff.

How to manage being a working parent with a child with SMA or other serious condition

As a parent of a baby or child with a serious condition, it can be hard to manage the different demands. A need for income, as well as personal autonomy, needs to be balanced against harder to access childcare and the support and hands-on help the child needs. You will also need to attend multiple medical appointments. 

Ideally, bosses should understand the need for flexibility with parents in your situation. With rare diseases, such as SMA, it can help to explain to your employer how the condition affects your family life.

There are a number of different laws and workplace practices that you should fully understand and access:

Dependency leave

You are entitled to take unpaid time off in an emergency for your child and your employer can’t penalise you for this. Parents of children with life-limiting conditions may need to take more dependency leave than others.

Flexible working

You have the right to apply for flexible working, for example, flexible hours or working from home. This may help you manage healthcare appointments. There are conditions you must meet, but employers can only refuse your request for a clear business reason. 

Different employers are more flexible than others. If your employer is inflexible, it may be a good reason for moving on. Be clear about what you want and why it would help as this enables you to make a good case for flexible working.

Parental leave

Children with SMA likely qualify for Disability Living Allowance or Personal Independence Payment. In this case, you are allowed to take up to four weeks per year of parental leave as individual days, rather than whole weeks. This can help you manage appointments, for example. 

Employers vary enormously on the support they offer parents. Try to select employers where you will feel heard, can manage the demands of parenting a child with a condition like spinal muscular atrophy, and excel in your career.

For more support with a child with spinal muscular atrophy, see Living with SMA.