Newborn Screening Family Stories:
Our daughter, Greta, was born with congenital hypothyroidism, which was first detected by her newborn screen. I can't possibly put into words what it means to us that she will be given the best possible chance of growing up strong and healthy. Greta was a sleepy and calm baby when she was born; had she not been screened, we wouldn't have had any indicator that something was wrong until it may have been too late.
With prompt results from MDH and follow-up from our pediatrician that confirmed the diagnosis, she is responding to medication, her thyroid levels are closing in on where they should be, and she is much more active and alert. We are still anxiously watching for milestones and signs of health, but we are told that she now has the chances of any other child to grow up without developmental delay. We're new parents, so it would be hard to convince us to breathe easy in any circumstance, but both our pediatrician and endocrinologist have done their best to assure us that all is well and that they are thrilled at how Greta is doing.
Before this happened, I assumed that my worst worry would be if she got hurt, and I didn't know how to help. Now, I fear not knowing that she is in danger. She will and would be loved completely by us and all our family – no matter what. But the idea that she might have suffered from something preventable is difficult to comprehend. Before Greta was born, I had already known that there was some opposition to newborn screening for concerns of privacy. I hadn't liked the argument then, and now, I'm all the more disturbed at the idea that there are individuals in this world who want to chip away the right of every child born in this state to have the best chance of growing up healthy.
Greta's newborn screening result didn't belong to me or my wife, and despite what the law provides, I don't feel that it was ours to accept or sign away. It didn't come to us by virtue of us being insured, or what a health plan saw fit to authorize as cost effective. It wasn't ours. It was vital information that belonged to Greta, just as it belongs to every other child born in Minnesota.
I am excited to learn that the screening program may be expanding to cover new conditions soon. I'm particularly happy to see more education as part of the plan: more parents need to hear this message, and not just let the test happen by default, but be invested in it as a key part of routine, healthy childbirth.
The Newborn Screening Program has made such a difference for Greta. Her results, and the quick treatment they set in motion, have preserved her ability to grow up as strong, as healthy, and as bright as she can. With any luck, her disorder will never be a big deal for her when she is older...just a daily timer on her phone and a bottle of pills to keep with her. To us, because of all it will allow her to do, her newborn screen will remain among the most important moments of her life.
With our deepest gratitude,
Ben and Arden