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From my brilliant cousin, Erin Shipley: further reasons to get tested regardless of what you choose to do with the results (her comments are from yesterday’s post, but they should be brought up a level so that everyone will read):
Whatever your values are there are certain things to think about when deciding to get tested or not, and if you are a carrier, whether to have your baby tested by amniocentesis. If you know that you are a carrier and ensure you have good insurance before conceiving, then if your child does get SMA, you will be able to provide them with the best care. This is NOT a time when you want a high deductible, 3 visits a year type of insurance plan or no insurance at all. Also, you probably want to check out the Medicaid / Medicare rules, income cutoffs and enrollment processes before the birth of your child. Just the time and transportation involved with taking care of a special needs child can be overwhelming. You don’t want to face a financial crisis simultaneously. (Medical bills are the #2 cause of bankruptcy in the US)
Also, early knowledge in the newborn allows for better care from delivery on, including possible enrollment in new therapies that might extend life or improve your child’s quality of life. And at the very least better understanding of how your child will develop and what they may need.
Lastly, getting tested at a genetics center gives the doctors and scientist working to find a cure for this disease more material to work with. Often there are slight differences in the deletion and mutation of the affected genes that can affect the search for a cure or help predict outcomes to help families and doctors plan the best therapies. This is certainly the case in SMA.
I think we would all agree that what we want for our children’s lives is the most happiness and least suffering. Getting tested isn’t just about choosing whether to have children, to use IVF or whether to terminate a pregnancy. Even for people who are not interested in making ANY of these types of decisions based on testing, there are options you will have if you know in advance that your child may be born with a genetic disease. And those options may save needless suffering on the part of your child, your family and your financial stability, and leave you in the best situation to care for a special child like Elie.
At the end of the day, the decision to get tested is up to each of us, but as a healthcare provider, who sees a LOT of unexpected illness seriously adversely affect families, I can tell you forewarned is forearmed. And it is often the child who pays for a lack of knowledge on the parent or healthcare provider’s part. I have seen babies in the NICU only get visited once a week because that is how often their parents could afford to drive the 3 hours to visit them and still feed their other children. However you decide to go as far as testing, think ahead when it involves your children, the better prepared you are for a serious illness or special need in your child, the better life they will have.