I am standing in the pharmacy staring at the surprisingly wide array of daily pill organizers. I did not expect there to be so many choices. I need a simple one, preferably clear, so I can be absolutely sure the pill is gone by the end of each day. There can be no mistakes.
At this moment, I am the youngest person in the pharmacy by at least 30 years. I have a giant lump in my throat and am willing myself not to cry. This purchase isn’t for me. It’s for my 10-day old daughter. Barely older than the week is long, yet here I am.
How did we get here?
Being as this was our second, I was prepared for those first few weeks that rush by in a blur. The sleep deprivation, endless laundry, meals eaten one-handed, “did anyone remember to feed the dog?” kind of days. After the birth of our son, my husband and I did everything together for weeks. Every feeding, every diaper change, every swaddle. We each wanted—maybe needed—a witness.
With our daughter, we changed our tactic to divide and conquer. We took shifts starting on our first night home. The dog was fed and so was our 3-year-old. We felt rested, happy, and like we were killing it as parents of two. We had been home one week when I made our first home-cooked meal, and my husband and I practically high-fived as we sat down to eat.
Then my phone rang.
I didn’t recognize the number, so off to voice mail it went. Also, we had hot food and two content kids.
“Hi. This is Nurse So-and-So from your pediatrician’s office. Something came back on your daughter’s newborn screening. Please call the office as soon as possible during regular office hours.”
The nurse called long after the office had closed, so there was no answer when I frantically called back. Surely someone wouldn’t leave that message and make a mother wait 15 hours for an answer. I called back four times just in case.
The facts: all babies born in the United States undergo a newborn screening before leaving the hospital. The screening tests for a variety of disorders that may otherwise go unnoticed at first. Finding them early is crucial for treatment to prevent serious issues caused by these disorders. Although all states perform newborn screening, every state tests for a variety of different disorders.
I know this because I googled like a crazy person for hours on end after listening to that message. I couldn’t even attempt to hold it together as I read through the disorders screened for by my state. I stopped when I got to shortened life expectancies. I didn’t know which one she had, and I wasn’t doing any of us any good. So much for the high-fives.
I rocked my daughter for an eternity that night, tears streaming down my face and landing on her cheeks. I hopelessly asked her which one it was, as if she could give me an answer. I just needed an answer.
The next morning, we had one—congenital hypothyroidism. The pediatrician wanted her retested immediately to make sure the screening results were right. If they were, she needed to start medication right away. My husband took her back to the hospital while I sobbed at home.
I knew hypothyroidism meant the thyroid wasn’t working properly, which is important for how the body uses energy. I had friends diagnosed with it as adults after noticing certain symptoms—always cold, fatigued, trouble losing weight.
What I didn’t know is that you could be born with it, hence the “congenital” part. In newborns, if left untreated, it can impair growth and cause severe brain damage. If medication is started in the first few weeks, a baby will develop normally. If, then. I felt like we hit the ground running and were racing against the clock.
The retest showed more of the same. Next thing I knew, I was picking out a daily pill organizer and teaching a two week-old baby how to drink a crushed pill from a spoon.
Of all the conditions screened for by my state, I breathed a sigh of relief knowing it was this one. I also felt tremendous guilt. My heart shattered knowing other parents were getting calls about much worse conditions. One little pill changed her trajectory. The same can’t be said for the others. If life didn’t feel fragile before, it sure did now.
Hypothyroidism has been part of our routine for three years now. There are regular blood draws, hormone level checks, growth and development charting, and drug dosage changes. It is a part of her just as much as her two different colored eyes and her sweet nature. She has grown and developed on target, and I have modern science to thank for that. I think about what could have been and am thankful this is what it was.
This story isn’t about newborn screenings, heart-wrenching phone calls, or busted thyroids. And this is only one side of the story. The other side is hers, and I have no idea how she’ll feel about all of this when she’s old enough to ask why she gets a pill at breakfast.
But this side of the story is about me, and it’s about you. It’s about the brave face you put on while you’re crumbling inside. It’s about doing the best you can with what you have at that particular moment. It’s about the strength you don’t know you have until you realize there is no alternative. Because when it comes to our children, what else can we choose but to be brave?
Guest post written by Erin O'Brien. Erin is an editor by day and a writer in every spare moment she can wrangle. She lives in Kentucky with her husband and two kids, all of whom remind her that today is the most important day. She loves hiking, meditation, and kindness. Her particular soft spots include black coffee, rainy days, and the honesty of kids.
Photo by Laurie Carrozzino.
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