Congenital Hypothyroidism…You Know…

posted from: http://www.thyroidmom.com/blog/you-know-congenital-hypothyroidism/

Blythe

thyroimom.com

I’m incredibly honored to feature a beautifully written blog post today by Erin O’Brien, whose daughter was born with Congenital Hypothyroidism.  Fellow parents of children with Congenital Hypothyroidism, you will undoubtedly relate to her thoughts and feelings. ~Blythe aka Thyroid Mom

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I recently wrote an essay about finding the strength to be brave for our children when we feel anything but strong or brave. The story centered around my newborn daughter’s diagnosis with congenital hypothyroidism. Blythe read my essay, reached out with the kindest words, and asked if I would share a bit more with you. I immediately thought, “Yes! Of course!” but then the weight of my “Yes!” started to feel somewhat daunting.

My essay was published on a blog about motherhood. I wrote from the heart, and the theme of bravery resonated with those mothers. But you, dear reader, are quite a different group. Sure, you’re mamas (and maybe some papas) just like them, but you’re also a lot more like me because you know. You know what it feels like to get the call that something came back on the newborn screening. You know what it feels like to drive your little bundle back to the hospital for additional testing. You know what it feels like to have the weight of the world on your shoulders while the ground shifts below you. You know. So to speak to you carries a lot of responsibility.

A lot of things went right our first week home from the hospital. We had a 3-year-old and a newborn, and I was surprised how well things were going. Our hearts were full. Then a nurse from our pediatrician’s office called. I’ll never forget those words: “Something came back on your daughter’s newborn screening.” My heart shattered.

I don’t need to talk about the thyroid gland because you know. I don’t need to talk about TSH, T3, or T4 because you know. I don’t need to talk about blood draws and daily pills because you know that, too. I want to talk about you.

You spent your whole pregnancy preparing. You picked paint colors, put together cribs, and bought onesies that looked way too small to fit anything real. You went to your appointments, read all the books, and counted down the days. You packed your hospital bag, settled into your room, and gave everything you had to give for that little one. You cried and kissed and hugged and thought things couldn’t possibly be better than this. You welcomed visitors, beamed with pride, and headed home when it was time.

Then one day you got that call, and your heart shattered, too. Maybe things were going really well, and that call turned your world upside down. Maybe you were barely hanging on, and that call was the last straw. You may have been somewhere in-between, but no matter where you were, that call changed your life. You spent the better part of a year doing everything to get ready for this little one, but one phone call left you reeling.

For me, the worst part was not knowing enough to even ask the right questions. We received conflicting advice from our pediatrician and the pediatric endocrinologist. Do we trust the doctor who has cared deeply for our children the last three years, or do we trust a specialist we’ve never met? I am a very confident decision maker, but I just wanted someone to tell me the right thing to do. You might know that feeling, too.

I felt robbed of that perfect week we had before getting that call. I felt like I was letting her down because I didn’t know the right questions to ask. I felt guilty for being so upset because many parents get calls about much worse things. She was alive, and we had a way forward. But it didn’t feel easy. It felt heavy. You know that feeling, too.

The truth is that congenital hypothyroidism is a daily part of our life. It’s our normal. My daughter is 3-years-old now, and thanks to modern medicine, she is doing incredibly well. We’ve already had brief discussions about the butterfly in her neck, mostly because her older brother is curious why she gets a pill and he doesn’t. Although it might sound strange to some, I am relieved this was the condition that came back on her newborn screening. You might know that feeling, too.

Our daughter has an amazing pediatric endocrinologist. During our first meeting, she looked at me and said, “I see a lot of disorders. This one? You can handle this. She is going to be okay.” Some of that weight started to fall from my shoulders. We had an advocate, and we were moving forward.

But when I think about that first phone call and the complete uncertainty I felt in the days following it, I still feel that pit in my stomach. That was some hard stuff. You know exactly what I mean. I didn’t need someone to hold my hand, but I wanted that call to be handled differently. I wanted someone to say “Listen. I know this is scary and probably feels very overwhelming right now. We need to do some more testing and get a clearer picture of what we’re dealing with. Then we’re going to take a deep breath, get you into the hands of a specialist, and you’re going to move forward. This is not what you expected, but you can do this.”

Maybe you did hear something along those lines. I honestly hope that’s the case. But maybe you still have a pit in your stomach when thinking about that call or that conversation. Either way, look how far you’ve come. Look how far you’ve brought your little one. And if you’re just entering these waters, know that you will be okay. This is not what you expected, but you will handle it. Both of you will move forward.

By Erin O’Brien, Guest Blogger for Thyroid Mom

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.

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