Seven days after his arrival the phone rang. Our physician was on the phone speaking simultaneously in warp speed and slow motion. From what I remember it went something like, "We have the results of Gage's newborn screening tests and it looks like there's a problem with his thyroid. You'll need to take him to the clinic right away for follow up bloodwork. In a couple of days we will have those results and will get him treated when we know more." I hung up the phone and called Jack in a hysterical panic. We rushed Gage to the clinic for a blood draw and headed home to wait. Before we arrived home, our doctor had called back. I am not certain if the nurses and lab technicians we saw tipped him off that I looked like a crazy mess, but he started with: issues with the thyroid are easy to treat, it is just something we'll need to deal with as soon as we can. It is a pretty minor issue. Also, by this point the North Dakota state epidemiologist had called to say that Gage needed to start medication immediately, without waiting for test results. There was a prescription waiting at the pharmacy for us.
Holy crap. I don't remember a lot about that afternoon but I remember telling Jack, "I don't even know what the *bleep* a thyroid does." Of course the first thing I did was look it up. Turned to the trusty Internet for information. That afternoon I answered a few of my questions, brought a few more to the surface and found very little about infants with thyroid disorders.
The next challenge was getting the medication into his tiny system. Synthroid is a very common drug, with very few side effects and, as far as we've been told up to this point, very little interaction with other drugs. However, the only form available is pill form. Meaning we had to grind it up, mix it with water or juice and make him drink it. The other factor is that it is supposed to be taken on an empty stomach. So we have a newborn learning to eat, not routinely drinking from a bottle, only consuming milk, hungry all of the time, who all of a sudden can only drink one ounce (maximum) of juice from a bottle every morning. Let's just say that some days were better than others. Since he was 8 or 9 months old, I've just given him the pill to chew and swallow. It is so much easier, faster and reliable. Keeping food out of his system for a while after he takes the pill is the bigger challenge. More days than not, he wakes up ravenously hungry.
When the test results from the second blood draw came back, they gave us a baseline for dosage. Six weeks later, they took more blood and found that his levels had stabilized and the dosing appeared to be correct. The dosing level has been increased two times since the first amount and he has finally grown into the 75 mcg/daily pill.
The actual diagnosis is congenital hypothyroidism. The heel pricks they do to newborns in the hospital? Checking for this very disorder is one of the main reasons they screen infants. I was scared out of my mind at first. But between our physician and the information I have uncovered online, it is a seemingly minor disorder. By taking one pill every day and monitoring levels with a blood test, Gage can grow and develop normally. Early intervention is key, as research suggests that prior to requiring the screening on newborns, congenital hypothyroidism maybe have been a leading cause of stunted growth and mental retardation.
Hypothyroidism ran our household for a while. I cannot count the number of times that I looked at my child, observed his abundance of energy, his lengthy tantrums, short temper and undesirable sleep patterns and wonder how much is "Gage" and how much is a result of too much or too little synthetic thyroid hormone. In the next installment, I'll try to share some of the instances where our observations lead to a blood test and a resulting change in dosage.
When Max's newborn screening test results all came back as normal, we had a celebratory meal and acknowledged that "We CAN make a functioning thyroid!"
We love our kids with all that we are, and would not change anything about the experiences that have brought us to present day. This information is more about documenting these issues and events before I completely forget so Gage has a record of this in the future.
A quick picture of Gage, April 13, 2007.
And 2 weeks later. Since the medication has kicked in and he woke out of the newborn stage, he has required constant stimulation. Its been a real trip. :)
Until next time.
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