Sean's Story: Parent's Letter Project Congenital hypothyroidism- Sean’s parents

Just one day after our son was born, we were told he had jaundice. This is a typical condition for many newborns, however our son's condition did not improve during the time he was in the hospital. In addition, he did not want to breast feed (or simply did not have the energy). He had a weak cry and slept a lot. We have another (older) son and we (at the time) thought the boys just had different personalities.

Our son came home after five days in the hospital (due to his jaundice), and we were advised to follow up with pediatrician. Approximately four days later, we received a call from a nurse practitioner at the hospital (where he was born) to inform us that our son had congenital hypothyroidism. This was concluded from his T4 and TSH levels on the First Newborn Screening Test results. We had no clue what this condition was. The nurse informed us that we would need to see his pediatrician immediately as well as an endocrinologist. 

Our hearts sank when she told us this was a lifelong condition. We called our pediatrician that same day only to discover the office was closed. However, she made an exception to see us. Our pediatrician prescribed thyroid replacement medication and contacted Endocrinology at Children's National for an appointment. Our appointment to see an Endocrinologist was set up immediately.

After just a short time on the medication, the jaundice disappeared and our son went from a quiet, overly sleepy child to an active, energetic child. He must take a daily dose of Levoxyl. He was originally on Levothyroxine, however this medicine does not dissolve easily in water. The Levoxyl is perfect for a child; simply put the tablet in a cup, pour water, and the pill dissolves. We use a feeding syringe to give him his medicine. Our son is now in his "terrible two's" stage. He does everything a normal 2-year-old does (and more).

From the time our son was born, he has been under the care of Audrey Austin, MD, and Elizabeth Parker, MD, at Children's National. He is developing normally and usually sees Dr. Parker every 3 to 4 months (depending on his T4 and TSH levels). Children's has done a great job answering all of our questions about this condition and we are very pleased with the services.

We will never forget what the nurse practitioner told us the day we found out about our son's condition. She said, "Nobody wants their child to have a lifelong medical condition, however if your child is to have one, you want your child to have this one." We didn't understand this at the time, but now we do.

Sincerely,

Sean's parents, Stacey and Taheel

Treatment Team

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