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This information sheet is for parents / carers whose baby (aged 0-12 months) has started to show symptoms of Spinal Muscular Atrophy (SMA) and has recently been diagnosed with the condition.

It talks through some of the emotions, thoughts and feelings you may be experiencing. It also discusses who you can talk to for support, and some practical suggestions for what can help.

If your baby has been part of the Oxford-Thames Valley-Wessex SMA newborn screening study and been diagnosed with SMA, please talk to your clinician about the diagnosis and what information here may be useful.

A baby’s diagnosis of SMA often comes as a big shock and can feel overwhelming. Some of the most common reactions include:

  • Distress and disbelief
  • Fear and anxiety
  • Sadness and upset
  • Anger and frustration

There is no ‘right or wrong’ way to feel. People can experience different combinations of these emotions at different times, as well as having other reactions – for example different levels of acceptance, hope, and expectations for the future. Whatever you are feeling, it is very understandable and important to know that as well as your family and friends, there are other people you can turn to for support at any time (see below).

It is important that you feel that the emotional impact on you of your baby’s diagnosis, along with your understandable protectiveness towards them, is acknowledged and addressed by the clinical team when you meet with them to discuss what care your baby will need, and possible treatment options. There is a lot to take in at a time when concentrating and remembering what you have heard can be very challenging. If possible, it may therefore be helpful to have both parents / carers, or a family member or close friend, there as well to hear what is said. This can also help with asking as many questions as many times as you need, and to have someone else there to talk things through with afterwards.

Some people want to do their own research during this time, including through internet searches and on social media. While there is lots out there that can be helpful, it is worth remembering that no two families have the same personal circumstances, and no two babies are the same in terms of the impact of their SMA and responses to any chosen treatment options. There is also lots of misinformation out there, so it is better to try and find information from reputable sources and those that have quality healthcare marks on them (such as on SMA UK’s website) for example, the Patient Information Forum TICK.

The clinician who has given you your baby’s diagnosis should answer any immediate questions you have. They should also offer you support from the wider clinical team. You should be able to discuss any fears and anxieties you have openly with your baby’s team.

Over time, you may also be offered support from other health and social care professionals. This could include:

  • Your baby’s Neuromuscular Care Advisor (NMA)
  • Your baby’s nurse / physiotherapist
  • A counsellor / psychologist

You can read more about the different sorts of health and social care professionals who may be involved in your baby’s care in our information sheet, ‘Who’s Who of Professionals’.

We have an experienced Support & Outreach Team who work UK-wide to support anyone affected by SMA. The team offers emotional support, practical advice and guidance, and is here to listen – whether at diagnosis or beyond. This free, confidential service is for any family member / carer affected by SMA.

The team can be in contact by email, phone, text or virtual meetings (such as on Zoom or Microsoft Teams). They are also able to visit you at home, if that is something you would find helpful.

You can find out more about the team and how to get in touch, here.

You may have concerns about how this diagnosis and the care your baby will need will affect your immediate family. It may be hard to know how to talk to your family about what the diagnosis means and they may, in turn, have concerns or questions about how SMA might affect them and their children. Your baby’s clinical team should be able to help with this. You can also see SMA UK’s two information sheets:

Your family and friends will want to know how best they can support you, but sometimes it can be difficult for them to know what to do or say. If you are comfortable doing so, talking with them about how you are doing can help. There may also be practical things they might be able to do (see more below).

Our information for family members and friends here may be helpful.

You may have your own religious leader or community you can turn to who will give you support.

A spiritual care team or chaplaincy service should also be available at most hospitals. These professionals are trained to talk about emotional and personal wellbeing. They will talk to anyone, no matter their beliefs, religion, or cultural identity. They will also be able to tell you about services which are local to you.

You may wish to speak to other parents / carers whose babies have SMA and have been through the diagnosis journey. You can speak to our Support & Outreach Team more about this and they may be able to connect you with another family.

Or

When the time is right, you (and others in your family) may also be interested in joining one or more of our Community WhatsApp Networks – these are for those affected by SMA to connect with others, share experiences and ask questions. Find out more on our website.

Some people find it helpful to talk about their feelings and how they are managing day-to-day, with an independent, trained professional. It can be an opportunity to express feelings you may not have wanted to say out loud to your partner, or anyone in your family or friendship group:


Free Talking Therapy Services:

  • England:

For those aged 18+ you can access free NHS Talking Therapies (formally known as IAPT – Improving Access to Psychological Therapies) for anxiety and depression. You can either refer yourself directly without a referral from a GP, or a GP can refer you (either way, you need to be registered with a GP to get talking therapies on the NHS).

Find out more >

 

  • Scotland:

NHS Scotland offers ‘Living Life’ – free phone support sessions (for those aged 16+) using Cognitive Behavioural Therapy (CBT) based techniques. You can refer yourself for an assessment by phoning 0800 328 9655.

Find out more >

 

  • Wales:

People aged 16 and over can sign up for a free 12-week course of online therapy called ‘SilverCloud’. This uses methods like Cognitive Behavioural Therapy (CBT) to help people manage any challenges they are facing.

Find out more >

 

  • Northern Ireland:

Referrals for any talking therapies must go through your GP.

Find out more >

Waiting times for an appointment with these services will vary and may be quite long.

Private counselling

If you think counselling would be helpful for you and it is an affordable option, you could consider seeing a local private counsellor. These organisations can help you find one:

 

British Association for Counselling and Psychotherapy (BACP) – guidance on counselling and how to find a suitable counsellor.

 

Counselling Directory – online information about different types of counselling and a directory to search for qualified counsellors:

 

If you are not sure who to speak to or which is the right route for you, our Support & Outreach Team is here to talk through your options.

As well as the support from your baby’s medical team, you may find our ‘Looking After’ guides helpful. These talk about the practical side of caring for a child who has 5q SMA. They have been written with both parents / carers of children who have SMA and expert healthcare professionals.

As there is great variation in how children are individually impacted by SMA (and, if they are receiving drug treatment, how they are responding and developing), you may find that only some of the information is relevant for your baby. Your clinician can help guide you:

We have information about other rarer forms of SMA on our website here but regret that as these conditions are very rare, we do not have specific ‘Looking After’ guides for them. If your child has recently been diagnosed with a rarer form of SMA, then our Support & Outreach Team is here if you have any questions or would like to talk things through.

We also have a wide range of information about all aspects of life that may be useful in the Children’s section of Living With SMA on our website.

Although it can be difficult, taking care of yourself at this tough time is really important – both mentally and physically.

This might include:

  • getting rest
  • taking breaks
  • eating well
  • getting out and about to see people, or spending time outside in green spaces such as a local park

To help with this, you could let family members and friends help with practical things like shopping, cleaning or other household needs.

You may find certain things helpful in managing your thoughts and feelings, such as exercising or listening to music. Some people like to write things down – if you are not sure where to start with this, Young Minds have a template you might find helpful.

You may also find you need private space from time to time, and this could include to express anger in a healthy way to vent feelings, such as by shouting, screaming, or crying.

You may find it helpful to have contact with:

Contact – Phone: 0808 808 3555 – information and support for families who have a disabled child: contact.org.uk

Scope: offer advice for managing the emotional impact of your child’s diagnosis:
scope.org.uk/advice-and-support/come-to-terms-with-child-diagnosis

Home Start:  Phone: 0116 464 5490 – depending on services in your area, volunteers may be able to offer friendship and practical help to families going through difficult times and those affected by disability. Parents can refer themselves for services or a referral can be made through a midwife, GP, social worker or health visitor: home-start.org.uk


Some children diagnosed with SMA may be very unwell. In these circumstances, families may find these support organisations helpful:

Together for Short Lives – Phone: 0800 808 8100 – information and support to families who have a child with a life-limiting condition. They will be able to tell you about hospice and other services in your area: togetherforshortlives.org.uk

Rainbow Trust Children’s Charity – Phone: 01372 363 438 – emotional and practical support to families who have a seriously ill child. You will need to see if services are available in your area: rainbowtrust.org.uk

Image shows the Patient Information Forum logo.Version 1
Author: SMA UK Information Production Team
First published: February 2024
Next full review due: February 2025


Links last checked: February 2024

The information provided in this guide, on our website, and through links to other websites, is designed to complement not be a substitute for clinical and professional care and advice.

For more detail about how we produce our information, please see these pages.

If you have any feedback about this information, please do let us know at: information@smauk.org.uk