Newborn Screening : When Results are Unexpected

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Disclosure : Thank you to Children’s Mercy Wichita for sponsoring this post and for providing quality medical services to our community of moms and their babies. This post specifically highlights the endocrinology unit, a familiar place for WMB team member Lindsay and her family. 

Did you know that thNewborn Screeninge State of Kansas does newborn screenings on every baby born in a hospital? I remember being vaguely aware of this with our first child. And by that, I mean I remember the nurse taking our baby girl away saying they were going to do a couple tests. Then I promptly fell asleep and woke up to our sweet girl snoozing in her bassinet next to my bed, and we never spent another moment thinking about it.

However, baby number two was a different story. Again, I remember them taking him away for what they said was a hearing test. Apparently, they also collect a small blood sample that is sent away to the state and tested for a series of 29 various “conditions”.  We didn’t think anything about these tests (again) until we returned home with our handsome little man and got a letter in the mail saying he needed to be retested for hypothyroidism.

We contacted our pediatrician and were retested, (twice), and the results were the same each time : our little man has a lifelong condition called hypothyroidism. After a little research, my husband and I were relieved and totally freaked out. Relieved that screening in babies takes place in the state of Kansas and freaked about what the potential consequences would have been for our boy had he not been tested.

Our pediatrician referred us to the endocrinology (read: hormone specialists) services at Children’s Mercy here in Wichita. We learned from our doctors and our own research that the thyroid is responsible for a HUGE portion of our baby’s physical and mental development from birth to age three.

And while the condition is serious and requires frequent monitoring and daily hormone therapy, our little man will be able to thrive and grow into a perfectly healthy adult thanks to newborn screenings and the quick and amazing services we received by a very knowledgeable and reassuring doctor at Children’s Mercy.

HypothyroidismAs an irrational and protective momma, I hate the idea that my little man will be taking a medication for the rest of his life, and that he will have to have regular blood tests to keep track of his condition. I hate that for the first several years of his life, we will be going to the specialist every 2 months. I hate that since this is a hereditary condition, and I have it, that it is my “fault.”

However, as a rational human being, I am so thankful that the diagnosis is manageable, “easy” to understand, and treatable. I am very thankful for people who know what they are doing and exude confidence so that I can in turn, be confident in them and in our situation. I am thankful for doctors who specialize in endocrinology and for Children’s Mercy for providing these services close to home.

As a momma whose kiddo has a special condition, the main thing I would recommend is to be an advocate for your kiddo. If you haven’t heard of the condition before, google it – we did. If you have concerns, ask questions – we did. If you aren’t confident with your care, ask for a referral to a specialist – we did.

We did all these things, and our questions and pursuit of more information gave our son the best chance for his future. 

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The Diabetes and Endocrinology Department at Children’s Mercy was recently ranked as one of the top 25 programs in the nation by U.S. News and World Report. Patients have access to a full range of care and support services to help them lead healthy lives. Patients benefit from a team approach to care and ongoing research that has earned us national recognition as a leader in treating children with diabetes and other endocrine and metabolic disorders.


Contributor LindsayLindsay was raised in Augusta, made a 4.5 year stop at K-State, majored in PR, then met and married her main squeeze Ryan. They moved to Newton right after graduation, and she worked for 5 years in non-profit but decided to completely ignore her college degree and become a teacher. She is the proud mom of an on-the-go toddler and new baby boy.

1 COMMENT

  1. This happened to us as well. I remember the anxiety we felt during the time between getting that letter in the mail and seeing a specialist. Luckily, by the time our son was 3, his thyroid had matured enough to put his T3, T4, and THS levels in a normal range. He does not take medication anymore and we still have his blood work done yearly. You are right to say that at least it is a manageable disease and thank goodness for those test. Good luck on your journey.

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