A member of my family has been diagnosed with SMA, what do I do now?
There is a lot of help and support out there. The hospital should put you in touch with the majority of the following people, but if they don't, make sure you ask. These people will make your families life much easier, and also prevent a lot of hospital admissions. If you are ever unsure of anything and cannot speak to your Community Nurse, phone your childrens ward. You should have open access and be able to be seen at any time of day or night.
Community nurses will visit you regularly and help support you with things such as NG feeding (tube feeding). They will provide your child with palliative care and will be available for contact at any time.
If you are a single parent or having difficulty coping through the night there may be a possibility of a night nurse to help out. Speak to your Community Nurse and they may be able to put you in touch with the right person to help.
There are special Children's Hospices which can be used for respite care, to give parents a break. They are specially trained and offer full palliative care. Many also arrange day trips for the family as a whole.
We would encourage you to visit your local hospice as soon as you feel ready. They have amazing facilities for play along with hydrotherapy pools. They are very bright and colourful place and it can feel very reassuring to know that there are a lot of people there to give you and your child the support you need.
A dietician will help advise you on your baby's dietary needs and may at some point suggest switching to other feeding methods, such as tube feeding. Your childs growth will be regularly monitored and feeds adjusted accordingly. If you do move onto a tube feed you may be given the option of moving onto nightly feeds by continuous drip. This will allow you more time during the day to do other things.
Health Visitors work for the NHS and offer additional support. They will check your child's weight regularly and will help you to get the most out of local services available to you. If you are not in touch with a Health Visitor please ask your GP to arrange this for you.
To talk to you about the diagnosis/prognosis and to offer support to children and other family members. This support should continue for as long as you may need it.
Community based physiotherapists will show you how to do little exercises with your child to help them move their secretions on their own. If there is need for a physiotherapist whilst in hospital they may need to help the child move any secretions by using a suction machine. A portable version of this machine is often provided for use in the home and while out on day trips.
An Occupational Therapist will help your baby to reach their upmost potential. This may include the provision of or advice on specialist equipment such as bath seats and car seats.
is a genetic condition an appointment can be made with a geneticist. You can be referred for genetic counselling by your GP or Childs Consultant. They can discuss with you the possible implications for any future pregnancies and advise you on pre-natal testing.
Talking to other families who have been in the same position can be a big comfort to many families. The first point of contact at the Ally Cadence Trust, Emma or Karl Humphries, both have personal experience of having an SMA Type 1
baby. We can also put you in contact with your nearest family support.
If your child has been diagnosed with SMA Type 1, the doctor who is caring for your child will sign the forms for Disability Living Allowance under the Special Rules (United Kingdom only). This means there is no qualifying period, you are entitled immediately, though it cannot be backdated. You will need to fill out a few details and sign the forms but most of it will be done for you.
You are entitled to DLA as soon as your child needs extra care above that of a typical child so we urge you to apply for this benefit as soon as you possibly can, you do not have to wait for the diagnosis first. Application forms are available from the Post Office or you can contact the DLA helpline;
Tel: 0800 882 200 - Monday to Friday, 8.30am to 6pm / Saturday, 9am - 1pm
Address: DSS, PO Box 50, Heywood, Lancashire, L10 2GF