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You give birth to a beautiful baby. Four months later, she has a respiratory arrest, both lungs collapse, she is intubated... and a diagnosis of SMA Type 1 appears. Doctors tell you your baby needs a G-tube for feeding, and will need either non-invasive ventilation or tracheostomy to breathe. Doctors also tell you that this won't mean the baby will live. This means you go home, give baby lots of love, and wait for the fatal day that can happen at any moment. There is no hope. Or is it?
That was what happenned to me. But you know what? I don't believe in expiration dates. I believe in God. Deirdre has no expiration date.
Doctors may offer a gloomy prediction of what will happen. Charts are to blame for this. An SMA baby has a death sentence with an unknown date. It is important to get all the facts about SMA (the Consensus of Care from August 07, the Choices available to deal with the illness, medical trials).
Make sure that your basic information comes from a good source. The SMA Support group is an invaluable resource for facts . The best way to learn to cope is to share your experiences with other parents that are going through the same process.
SMA is not the end. Anyone can die anytime. Only a few really live life. Just do the best you can for your baby, and don't wait for a deadline. These days, with so much information, technology, and support, it is possible to keep fighting SMA, it is possible for SMA patients to live productive and happy lives. It is possible for SMA kids to REALLY live.
Here you will find all links that go to reliable resources and information about SMA. Definitions, clinical trials, research, and basics on treating SMA.
