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TALK TO YOUR DOCTOR

Spinal muscular atrophy (SMA) is a disease which progresses quickly, so every day matters. Noticing signs early is key, because the sooner a baby can receive care from their doctor, the better. If you feel something isn’t right with your baby, or your baby is displaying any of the early signs of SMA, trust your instincts and speak to your doctor

Step 1

See your doctor

Call your doctor or use their online services to book an appointment. You may be able to get an appointment on the same day

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Step 2

Be prepared

It’s natural to feel anxious when talking to your doctor about your baby’s development or health. To help you prepare for the discussion, follow these tips:

  • Note down key signs and concerns you have about your baby’s development

  • Keep a diary of the changes you notice and the dates they occur

  • It can be helpful to show your doctor any videos you may have which show lost motor milestones or regression over time, or examples of other signs

  • Beforehand, write down any key questions you want to ask

Step 3

Discuss your concerns

When speaking to your doctor, the more information you can give them, the better equipped they’ll be to provide the best advice or point you in the right direction. Ask your doctor about next steps and what to expect

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Talk to your doctor
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SYMPTOM CHECKLIST

Use our Symptom Checklist below to make a note of your baby’s symptoms

As you click on the symptoms your baby shows, a personalized discussion guide will be created for you to download. It’s specific to your baby’s symptoms and will aid your conversations with your doctor

Select age range:

Poor head control in 0-6 month baby is a symptom of spinal muscular atrophy (SMA)

When lying on their back or tummy; they might struggle to move their head from side-to-side, and to lift their head up. When on their back their head may seem to rest on one side of their body with little movement

Weak legs and arms in 0-6 month baby is a symptom of spinal muscular atrophy (SMA)

When lying on their back your baby may not move or lift their arms and legs very much, rarely kicking their legs or moving their arms away from their body. They may struggle to reach for things

Fast belly breathing in 0-6 month baby is a symptom of spinal muscular atrophy (SMA)

Your baby’s breathing may be fast, even when they are resting. When breathing, their belly may move up and down noticeably more than their chest

Difficulty feeding or swallowing in 0-6 month baby is a symptom of spinal muscular atrophy (SMA)

Your baby may struggle to suck or swallow when feeding due to weakness, and you may notice they are slow when feeding as they struggle to swallow

A Weak cry and cough in 0-6 month baby is a symptom of spinal muscular atrophy (SMA)

Your baby’s cry might be difficult to hear and seem weak, their cough may sound weak and they may cough repeatedly and sound ‘chesty’

Download your personalized discussion guide to help prepare for conversations with your baby’s doctor:

DISCUSSION GUIDE
Weak legs and arms in 6-18 month baby is a symptom of spinal muscular atrophy (SMA)

Your baby’s arms and legs may seem floppy and seem like they lack strength, this is more noticeable in the legs. They may find it hard to support themselves using legs when held, and struggle to stand or walk

Struggling to sit unsupported in 6-18 month baby is a symptom of spinal muscular atrophy (SMA)

When placed sitting upright, your baby might struggle to stay still for long and may lean forward or to one side. Your baby may find sitting increasingly difficult and need help

Can't roll over in 6-18 month baby is a symptom of spinal muscular atrophy (SMA)

When lying on their back your baby might rock from side-to-side but struggle to roll on to their side, or roll onto their tummy

Shaking hands in 6-18 month baby is a symptom of spinal muscular atrophy (SMA)

When holding their arms out they may have minor tremors or shakes seen in their fingers or hands

Slow or lost physical development in 6-18 month baby is a symptom of spinal muscular atrophy (SMA)

They may be slow to achieve developmental milestones such as sitting without support, these skills may become more difficult over time

Download your personalized discussion guide to help prepare for conversations with your baby’s doctor:

DISCUSSION GUIDE

References

References

Cambridgeshire Community Services NHS Trust. Child Development milestones. Available at: https://www.cambscommunityservices.nhs.uk/advice/childhood-development/milestones Date accessed: November 2022.

Chabanon A, et al. PLoS One. 2018;13(7). doi: 10.1371/journal.pone.0201004.

Glascock J, et al. J Neuromuscul Dis. 2018;5(2):145–58.

Govoni A, et al. Mol Neurobiol. 2018;55(8):6307–18.

Healthy children. Physical Developmental Delays: What to look for. Available at: https://www.healthychildren.org/English/MotorDelay/Pages/default.aspx#/activity/0to7months. Date accessed: November 2022.

Kirschner J, et al. Eur J Paediatr Neurol. 2020 Jul 9:S1090–3798(20)30142–2. Published online ahead of print.

Kolb SJ and Kissel JT. Neurol Clin. 2015;33(4):831–46.

LoMauro A, et al. PLoS One. 2016;11(11):e0165818. doi: 10.1371/journal.pone.0165818.

NHS (2018). Hypotonia. Available at: https://www.nhs.uk/conditions/hypotonia/. Date accessed: November 2022.

Prior TW, et al. Spinal Muscular Atrophy. 2000 Feb 24 [Updated 2019 Nov 14]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2020.

Qian Y, et al. BMC Neurology. 2015;15:217.

SMA Europe. Type 1. Available at: https://www.sma-europe.eu/essentials/spinal-muscular-atrophy-sma/type-1/. Date accessed: November 2022.

SMA Europe. Type 2. Available at: https://www.sma-europe.eu/essentials/spinal-muscular-atrophy-sma/type-2/. Date accessed: November 2022.

Wang CH, et al. J Child Neurol. 2007;22(8):1027–49.