congenital hypothyroidism

When Perfect Isn't Perfect

On May 12, 2016 my daughter was born. She was perfect. The doctors said she was perfect each time they checked her out. I saw her and all I saw was perfection. Then 5 days later we got a call from her pediatrician.  

Her doctor told us that the hospital had contacted him with the results of her last blood test. Her TSH levels were very high. He had made an appointment for us for the next morning with an endocrinologist to check her out and let us know how to proceed. I am always a researcher. I have to know all the facts about a situation.  So I fired up my fingertips and did some searching. Based on the limited information we were given, I.e. Elevated TSH levels, I determined that their concern was that Hailey had congenital hypothyroidism. There are a variety of ways that this can manifest. The thyroid can be deformed or in the wrong place or underdeveloped causing it to produce less hormones or no hormones at all. The hormones produced in the thyroid are essential for proper growth and brain development. This is especially important in the first three years of life.

On the bright side, if caught in the first few weeks of life, and properly treated, the child's hormone levels should return to normal and they should develop properly.

So, on Hailey's 6th day of life she saw an endocrinologist, had blood taken, and began taking a pill that she will likely have to take to rest of her life. The endocrinologist stated that based on her levels, it appeared that her thyroid was not producing the T3 and T4 hormones at all. A week later her blood was retested and her hormone levels were already on the rise. Her hormone replacement dosage was modified and another appointment was scheduled for two weeks later.


Tomorrow is her next appointment where they will check her growth and determine if her hormone levels have returned to normal. She feels bigger and stronger, but having the confirmation from the doctor will do amazing things for my peace of mind.

Finding out my perfect baby wasn't perfect was heartbreaking. After being told she was perfect multiple times in the hospital, we felt almost cheated. If we were told immediately we wouldn't have been lulled into this false sense of security. Not knowing if the condition has already had an affect on your baby is also scary. The odds that she will develop normally are good, which is reassuring to the math major in me, but nothing is certain.

On the other hand, treatment is pretty simple. You just take a small pill each day much like a vitamin. Giving the pill to an infant is a bit of a process since you have to crush it, dissolve it in water, and then get her to swallow it. I am well aware that there are much worse conditions. Having seen the affects that diabetes has had on my brother (blindness, amputations, kidney failure, etc.) I know that there are far worse conditions. But as a mom, any health issue with your baby can be overwhelming. Watching her give blood breaks my heart every time. Especially since it involves pricking her heel, then squeezing it multiple times to get the blood out drop by drop.

The conclusion is, at least at this point, is that when perfect isn't perfect, you just get stronger. It doesn't mean you don't feel the concern or worry or fear for your baby, you just learn to look on the bright side and try not to assume the worst. Sometimes I fear I will over analyze her development, but I try to take everything day by day. No matter what happens, she's still perfect in my eyes and in the eyes of her family. She is loved.



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