People who have not faced the heartache of a medically complex child may have a hard time seeing the value in legislation to undo a change made to the way Minnesota handles newborn screening results (SF2047/HF2526). As the mother of a child directly impacted by the change, which went into effect the day my son was born, Nov. 15, 2011, my side and my argument need to be heard and understood.
From the minute my Parker Leo was born, he had doctors puzzled. Within a few days he was undergoing specialized tests as the doctors knew something was not right. Test after test everything came back normal.
Despite this, our son was on the verge of death. We refused to give up.
When he was 6 months old, doctors believed they found a diagnosis. The only way to find out for sure, however, was to access Parker’s newborn screening card for testing. The suspected disease could be diagnosed only with newborn blood. The Minnesota Department of Health was contacted and we were informed his screening card had been destroyed several months earlier because of the legislation change that had taken effect on his birth date. We had no idea his newborn screening card would be treated differently than those of his older sisters.
Had Parker been born a day earlier, we could have had a diagnosis - or definitively ruled one out.
Parker is now nearly 2½. He routinely undergoes invasive, stressful and expensive testing. He has had spinal taps, specialized imaging, hospitalizations for observation and more testing. He has had specific genetic tests and even whole exome sequencing. Nothing has been able to give us a diagnosis. And no diagnosis means no prognosis. No diagnosis also means no treatment or cure.
Parker makes us proud every day of his life. He shows us what perseverance and hope can bring. He will forever have the innocence of a young child, that fresh untarnished view of the world that the rest of us can only wish to have.
The opponents to HF2526/SF2047 are worried about privacy. So let them opt out; they would have that option under this bill. If they are willing to sacrifice the future of their own children, so be it. But they do not have the right to sacrifice the future of anyone else’s child - like they did to my son.
As a mother who is directly affected by not having a newborn screening card saved, I ask that HF2526/SF2047 be supported. Let’s save the lives and quality of life of Minnesota’s children.
It is too late for Parker; let’s not harm any other children.
Heather Kainz lives in Virginia, Minn., and will be moving soon to Duluth.