NEWLY DIAGNOSED BABIES:
WHAT YOU SHOULD KNOW NOW
YOUR ALTERNATIVES
When facing a diagnosis of SMA families face several choices:
1. NON-INVASIVE ALTERNATIVE
Use ventilation through a nasal mask using a bi-pap ventilator that supplements the baby's natural breathing. Baby will need respiratory therapy using "cough assist", percussion and "chest tapping", and suction as necessary. Use a lot of aggressive physical therapy for successful outcomes.
2. INVASIVE ALTERNATIVE
Use tracheotomy to always maintain an open airway and mechanical ventilation. SMA type I may need it if the non-invasive method does not work for your individual case. SMA type II and type III should not need it.
3. NATURAL COURSE
Using methods of care to make the baby feel comfortable letting nature take its course. Suction may include basic use of morphine to alleviate pain.
After deciding that which choice is the one you want to take, many steps will make you more involved in that decition. Over time you will see that the decision that you chose was the best for your individual case. There is not a right or wrong selection. Each selection is a personal family choice.
IMPORTANT BASIC DOCUMENTS
It is important that you read and understand the Standard of Care Consensus AME 2007. It is an official document that has already been published on the MDA. Check out the 5 important basic documents listed in the left column.
YOUR CHILD'S CARE
It is important that you familiarize yourself with all procedures for caring for your child. The most basic is the use of suction. Remember, your life will depend on what you can do to help. Learn all that professionals do, ask questions, and practice what you learned. You must learn about physical therapy, respiratory therapy, and speech therapy. You will ultimately be the best caregiver for your child. In the future, all the professionals that come to your house will probably need your training and your feedback as you will become the expert in your child's care. Look for other SMA families, ask lots of questions, and remember that each child is different.
READ ABOUT SMA AS MUCH AS YOU CAN
Read about SMA, and consult with your doctors to choose the best care for your child. Dr.Bach has a useful book to learn about the management of neurological diseases: Management of Patients with Neuromuscular Disease (2004). That is most SMA's families bible.
Visit the website of the FSMA and Dr. Swoboda to familiarize yourself with what is SMA:
SMA: DEFINITION, SYMPTOMS & DIAGNOSTIC
EXERCISE & MOBILITY MAINTENANCE
SPECIAL CONSIDERATIONS FOR SMA INFANTS
CONTAC OTHER SMA FAMILIES (HIGHLY RECOMMENDED!)
Contact other families who can give guidance and information so that you understand everything thoroughly and clearly. My personal suggestion is that you join SMASPACE because you can get answers quickly and there are groups divided by each type of SMA. There is a group for newly diagnosed, and doctors like Swoboda and Schroth frequent the place.
Also join the SMA Support Chat to interact daily as many families there, you can find supporting documents and you can learn from past discussions.
Finally, go to Facebook and join SMA Families group. You will get plenty of feedback really fast as well as you will get to learn a lot from other families.
Remember, you're not alone. From experience, the worst mistake you can make is to decide not to contact other families. We are open to advice and suggestions, constantly helping to improve the quality of life of Deirdre. It is important to learn from others' experiences, and apply all that is positive to create a good environment for your child support. The road is not easy, it is important to accept that the SMA is a fatal condition, but there are ways to sweeten the experience with lots of love, courage, and determination.
EVERYTHING ABOUT SPINAL MUSCULAR ATROPHY
IMPORTANT BASIC DOCUMENTS THAT EVERYONE MUST HAVE
SMA Consensus of Standards of Care 2007
LET'S DESTROY THIS MONSTER!
DAILY CARE MANUAL FOR DEIRDRE MEDINA
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