2 years into congenital hypothyroidism and doing great.

Milla in the car with me on our date. She is “reading”.

Last week, Milla and I took a day to visit her endocrinologist in Birmingham. It was our special date- and one of those days when I am reminded how what was once frightening has become “normal” and part of our everyday lives. When we first heard the news, I was dumbstruck- it seemed impossible that my “best nurser” and my most content baby could have been born without a thyroid. Being one of those mothers- and one of those women- who assumes responsibility for educating herself about her kids and their individual needs, I started to study CH.

The more I learned, the less I worried. And the less I worried, the more I noticed that Milla was a thriving, happy, loving child whose lack of a thyroid did nothing to reduce her zest for life.

Milla shows me the pictures in between “reading”.

As Milla sits on the cusp of three years, I celebrate her feistiness and her daily discoveries. She can count anything in the world up to ten, and she peppers her daily requests with words like “actually” and “disgusting”- perhaps the influence of having a big brother like Max.

Since her doctor prefers to keep her hyperthyroid (as opposed to hypothyroid), sometimes Milla gets hot flashes or has a tendency to sweat more quickly than she would if her thyroid levels stay in range. This is only the case because CH is so rare that drug companies prefer not to invest the production of Synthroid doses for infants and children- so we have to take adult doses and half them or quarter them, thus making an inexact science of what is made more exact in adults. For thorough information, you want to peek at the following:

Guidelines for Management of Congenital Hypothyroidism (APEG)
Childhood and Congenital Hypothyroidism (Patient.co.uk)
“Outcome for Congenital Hypothyroidism” (J. Hulse)

During our three year journey, we have learned many things about CH, Milla, and ourselves that may have made a difference in her stellar outcome (she has stayed in the 70-80% height and weight range of the development charts). Here’s the short list:

  1. Synthroid (as opposed to generic thyroxine) works best for Milla and there is little difference in cost between the two.
  2. The medicine pills taste sweet and Milla has not issue with chewing hers up every day.
  3. Multivitamins with iron reduce the absorption of Synthroid, so space out the time between vitamins and medicine.
  4. In most cases, a “treated” (or well-medicated) CH child is like any other child with a thyroid. Don’t be too quick to attribute quirks or preferences to CH.
  5. Being born with a thyroid in Milla’s case has not changed the way she “presents” other illnesses. In other words, she still has fever is she has a virus. Don’t let inexperienced medical staff worry you (i.e. an ER physician suggests your child may have pneumonia with no signs due to CH thus requiring chest xrays when it is perfectly obvious she has croup and only requires treatment for croup).
  6. Having a child with a rare disease means you have to be informed and prepared to educate others. In our case, both our pediatrician and our local pharmacists had never treated anyone with CH before. We all learn together and communication is critical.
  7. Keep your endocrinologists phone number handy and make sure other medical staff treating your child consults with the endo before beginning any drastic treatments or diagnostic procedures.
  8. Sharing details and information about your child’s symptoms and developments with medical professionals helps increase knowledge about rare diseases. You are your child’s lover, parent, and advocate- but you are also the advocate and support team for all the CH babies (and their families) who will be born in the future. The more we know, the better the outcomes for everyone.

The King and I now know that we will never “understand” why Milla was born with CH- and we learn everyday why the satisfaction of an answer matters less and less when little Mills loves and lives life so very very well. Once I stopped thinking of Milla’s CH as a problem to be solved rather than a condition to be treated, I realized how much I owed this gradual discovery to all the moms out there who shared their CH stories and who helped me along.

Yes, there are stories we tell to hand one another along. These stories, whether shared in person or through emails, resemble an open hand. Daring to trust that hand and hold it makes our lives richer and full of radiance. So if you have googled “congenital hypothyroidism” and found yourself here, forehead creased with worry and heart made heavy by fear, don’t be afraid to take this open hand and email me. We are here for each other- or this entire “life” thing is pathetic.

My hand is here for yours. One day, your hand will be there waiting to warm someone’s elses. As John Prine so aptly put it, “That’s the way that the world goes by…”

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