I wanted to start off by talking about the day I received the call from our Pediatrician telling us that there was something wrong with our son. We had only met the Pediatrican once and that was at the hospital shortly after our first son was born. He was very nice and we liked him a lot. We were surprised, though, for him to be calling us at home only a few days later. He told us that the newborn screening test revealed that our son had a very high TSH and that it may mean that he had a disorder called Congenital Hypothyroidism. He indicated that he had referred us to the Department of Pediatric Endocrinology at the Children’s Hospital about 30 minutes from our home. He said they needed to do more blood work and told us which lab to visit and when. I honestly barely remembered that they had even done any bloodwork on him while we were in the hospital. I was in total shock and immediately began to search the Internet for information on Congenital Hypothyroidism. The thing that alarmed me the most was the information I read about what happens if Congenital Hypothyroidism is not treated.
I felt total despair. We tried for nearly 2 years to conceive our son. My pregnancy was normal and I had no issues during pregnancy. I had hypothyroidism but was well monitored during my pregnancy and took my medication during the entire pregnancy. My son was born early but only by a few weeks. By all accounts, he seemed normal. How could he possibly have anything wrong with him? What did this mean for our future?
Then, we took him for bloodwork. I had a difficult time recovering from my C-section so even the trip to the lab was difficult for me. I had no idea that they had to take his blood from his heel. I stood helpless as they squeezed his tiny heel for droplets of blood. I cried as I held my screaming infant on the way back to the car.
The phone rang again…this time it was a doctor from the Children’s Hospital informing me that my son’s TSH had risen even more. She explained that the rise in TSH was more than a normal newborn surge and that our son needed medication immediately. We asked more questions but still felt very confused and there were no appointments available for us to see the Dr prior to starting medication. I recall my husband coming home with a bottle of pills. We stared at it wondering how we could get our breastfed infant to take a pill. My husband invented a system whereby we crushed the pill and fed it to our son through a syringe/bottle nipple contraption.
Every morning was a nightmare. We anguished over whether he’d gotten enough medicine (bc a small amount stuck to the syringe), whether he should have more if he spit up, whether it was okay to breastfeed before he had his medicine….fearing that any wrong move would irreparably damage our son.
Finally, we met with the doctor and many of our concerns were assuaged, but the questions lingered in my mind. Every single thing that happened made me wonder if it was caused by the Congenital Hypothyroidism or if it was just normal baby stuff. He was my first and I hadn’t been around a lot of other babies. I knew that many children faced much worse ordeals, and I felt guilty for wishing my son didn’t have this condition. I finally decided that it was okay to wish for better things for my son…it was okay to wish he didn’t have blood tests and daily medications or symptoms that can’t be calmed by medications. Ultimately, though, I stopped feeling bad and stopped feeling guilty and started feeling thankful for the medication and the good doctors and the things that my children will gain from dealing with this condition.
If you are dealing with the blow of the initial diagnosis of Congenital Hypothyroidism, I encourage you to reach out for support. I encourage you to ask questions, advocate for your children and do what you trust is right by your child. Know that it’s okay to wish for normal, it’s okay to cry and be sad, but know that it’s going to be okay and that you are not alone!
-by Blythe Clifford
