My Child Has Congenital Hypothyroidism

I am Thyroid Mom. I have been talking to parents and grandparents of children who were diagnosed with congenital hypothyroidism for several years now. Until this year, I had never met (face to face) with another mother of a child with congenital hypothyroidism. I had never met another child, another than my own, who had congenital hypothyroidism. Imagine my surprise when one day my endocrinologist said to me that she had a patient I needed to speak with. She told me that another patient of hers had just had a son diagnosed with congenital hypothyroidism and that if it was okay with me, she’d like to pass my email address along to her other patient. A few months later, I met my friend Shelley and her son, Gavin. I am pleased to share her story with you and thrilled that she is my guest blogger this week. My hope is that her story helps those of you dealing with the diagnosis of congenital hypothyroidism. ~ Blythe aka Thyroid Mom

My Child Has Congenital Hypothyroidism: A New Mom Confronts the Diagnosis

One week after my husband, Jeff, and I had taken our son, Gavin, home from the hospital, I got a call from the lab. I remember that we were outside in our backyard, walking around in the nice weather and showing Gavin the plants and flowers, when my cell phone rang. I answered it and was confused when the person from the lab told me that Gavin’s newborn blood work was abnormal. “WHAT?” I said. “What do you mean, ‘abnormal’?” I stopped walking abruptly, and Jeff, who was holding Gavin, looked at me with alarm. No one wants to hear those words about their sweet newborn baby.

“His TSH was 155. You need to bring him in to the hospital to repeat the thyroid test,” the lab tech said.

I knew a lot about thyroid disorders, having one myself, but I did not know it was possible for a newborn baby to have such a high TSH number. “What does that mean, ‘a TSH of 155’?”

“I can’t tell you anything else. You just need to bring him in to have him tested again. And it needs to be today.”

Five years before I heard the lab tech tell me those words about my son’s abnormal thyroid levels, I was diagnosed with hypothyroidism. I had been aware of the fact that it was very likely that I would develop a thyroid condition at some point because most people on both sides of my family have hypothyroidism. Nevertheless, even with this knowledge of a strong family history, I had endured symptoms for a while—cold intolerance and fatigue, namely—and had just accepted them as my “normal.” I had been experiencing these symptoms since middle or high school, but they’d gotten worse during my first year of teaching when I wanted to go to bed around 4 or 5 in the afternoon ( high schoolers can be exhausting, but not that exhausting!). When my endocrinologist put me on Synthroid, I felt alert, focused and finally free of being cold all the time. THIS is what “normal” feels like, I thought.

One year after I was put on Synthroid, my mom, who also has hypothyroidism, was diagnosed with thyroid cancer, Stage III papillary cancer with a follicular variant. The time right after her diagnosis was one of the worst times in my life. She was diagnosed in April of 2010 and had her entire thyroid, two parathyroids and eleven lymph nodes removed. Later, in July, she also received radioactive iodine treatment to knock out the rest of the thyroid cancer cells that may have been elsewhere in her body, and she has been in remission since then. She has handled her diagnosis, treatment and subsequent post-cancer testing with grace and bravery, and I am so thankful she is doing well.

With having experienced all of that in regards to thyroid issues, I thought we were through…until Gavin was born with congenital hypothyroidism. After the call with the lab, we rushed over that day to a hospital lab to have the test repeated. It was still 155, so we were referred to a pediatric endocrinologist at a nearby children’s hospital for treatment. By this time my husband and I had done some research on congenital hypothyroidism, and we knew enough to be upset about his diagnosis. Only one in 3,000-4,000 babies is born with this, and if left untreated, it leads to severe mental and physical disabilities. Although he didn’t have some of the congenital hypothyroidism symptoms at birth—like a large soft spot, poor muscle tone or a hernia—he did have a low body temperature of 96.8, which definitely indicated that his thyroid was indeed not functioning well or at all.

Our pediatric endocrinologist put Gavin on 37 ½ mcg of Synthroid, and we started carefully crushing up the medicine, mixing it with some breast milk, and giving it to him once a day. The medicine administration was a highly stressful event at first, and I was anxious about not getting all of the Synthroid powder into Gavin and then having him suffer ill effects for the rest of his life due to our carelessness. Lab draws were anxiety-producing at first as well. During one early blood draw, the phlebotomist could not find the vein very easily, and she kept extracting the needle, putting it back in, and digging around in his little arm. He screamed and wailed, of course, like he was in the worst pain, and I broke down in tears in the lab.

A few weeks after our initial appointment with the pediatric endocrinologist, the test results came back for the thyroid antibodies, which, if they’d been present, would have indicated that his hypothyroidism was transient and solely due to my antibodies affecting him in utero, but this was not the case, and we had to reluctantly accept that his diagnosis was permanent.

Fortunately, it has gotten a lot easier since then. I met Blythe though our endocrinologist and she has been so helpful with answering all of my questions and offering support. It has been very reassuring to see that her two boys are doing well and thriving; I look to them when I wonder how Gavin will manage with his congenital hypothyroidism when he gets older. Blood draws now are generally uneventful; Gavin waves at all of the people in the waiting area and barely flinches when they put the needle in. I’ve become a pro at giving him the Synthroid, it no longer fills me with anxiety and I’ve never missed a dose. We’ve been very lucky that his main pediatric endocrinologist has taken such good care of him. She lets me take him in to get lab work whenever I feel it is appropriate, she communicates well about his dosage, and she seems genuinely interested in his well-being.

The attending pediatric endocrinologist that he occasionally sees claims that this is the best endocrine disorder to have, if a baby has to have one, that its treatment is “nothing more major than treating a vitamin deficiency.” I do not feel quite that casual about it, but perhaps one day I’ll get close to that point. I am sure that there will be more obstacles in the future with respect to his congenital hypothyroidism, but for now we’re doing well and have adjusted to his diagnosis. I feel that my history with thyroid disorders has allowed me to be able to relate to what he’s going through and what he will go through during his life. Gavin is now a sweet, intelligent, active 10-month-old baby, and due to newborn screening and prompt treatment, he has a bright future ahead of him.

By Shelley M., Guest Blogger for Thyroid Mom