Children with spinal muscular atrophy type 1 will experience breathing difficulties and will require a personalized respiratory care plan. There are interventions that can help make breathing easier for infants with SMA type 1 and also help with feeding, fighting infections and making life more comfortable. According to CureSMA, here are some items parents need to consider when putting together a respiratory care plan for an infant with SMA type 1.
The required breathing support will depend on the infant and the severity of the disease. It will also change over time. Your healthcare team will establish which interventions will work best for your child. These may include a BiPAP or ventilation machine, particularly if your child has a cold or chest infection. Many infants with SMA type 1 need help breathing through the night in order to get quality sleep. Children with more severe cases of SMA may need round-the-clock breathing assistance and may require intubation.
Non-Invasive Breathing Support
Some babies and young children cope very well with a mouth mask or nose and mouth mask attached to a ventilation or BiPAP machine, which both deliver a constant stream of oxygen to assist breathing. Common problems include sores around the mask area or rejection of the mask. If your child requires 24-hour oxygen then you may need to look for alternatives.
Intubation is considered an invasive therapy but may be a better option if your child requires oxygen around the clock or isn’t coping well with a face mask. It’s often used when a child has a bad cold or infection, though if it’s needed long term, a tracheostomy might be a better solution, where air is delivered right into the trachea (windpipe) through a tube.
End-of-Life Palliative Care
If your child is suffering and you decide you no longer wish to prolong your their life, you may consider palliative care. This would mean withdrawing invasive breathing interventions and opting for gentle ways to keep your child as comfortable as possible.
There is no wrong or right way to approach end-of-life care, it’s a decision you must make as a family in consultation with your healthcare team.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.