Congenital Hypothyroidism: “Sorry, there is something wrong with your baby…”

This time last year I was probably sitting on my bed bawling my eyes out and feeling pretty hopeless. If you remember I had recently celebrated the 1st birthday of our baby girl (check out my trip down memory lane ya’ll, it’s quite scenic) and that would mean a year ago, she was about a week old.

At the doctor’s surgery, the day we got the news

Well, at a few days old, we were summoned to her pediatricians office where he delivered world altering news with a steady look on his face: “The test results came back. Your baby has been diagnosed with Congenital Hypothyroidism.”

The rest was a blur as I tried to hold back the tears.
My perfect, beautiful, baby girl – the one that I had been dreaming big dreams for… the one who was going to change the world and do great things… the one that was an answer to a prayer… there was something wrong with her.
There was something wrong with my baby.
The worst news a new mother could hear. I don’t know how I made it through that appointment because I could not wait to be alone so that I could cry my heart out. How could this happen to us? To her? To me?

The doc said that the condition affects 1 in 5000 babies and in his +20 years of being in the field (and he is a favorite in our city), he has only ever treated 1 other baby with the condition. And that was when he first started practicing. So the condition is THAT rare.

The day she started meds

He said a lot of other things, which was honestly just a bunch of words, with phrases like “growth could be stunted” and “learning disability” and “medication for the rest of her life” screaming out at me. And all I could think of was… if it’s so rare then why does MY baby have it??? Couldn’t it skip us? Couldn’t we perhaps just give it back, and take spot number 4999 and have it pass on to someone else, sorry for whoever that is, I am sure they can handle it. But I cant. I just cant.

Backtrack a bit to a few days prior: She was a few hours old when the doc came to my hospital bed to tell us that they found an abnormality in her bloods (Blood screening is done for all newborn babies, immediately after they are born). He said that they would be running tests but it’s probably nothing. He threw around words like “T4 reading” and “TSH levels” which really meant nothing to me because I could not wait to leave the hospital with my baby girl so that we could start our lives with her. I only realized the enormity of the situation when I was sitting in his office a week later, listening to him deliver the devastating news. I think I was in denial.

What is Congenital Hypothyroidism?
Eventually I calmed myself down enough to absorb the information:
My curly’s thyroid gland was under performing. This is basically what it boiled down to.
We later (muuuch later) found out that she was born with half a thyroid gland. A thyroid gland is a small butterfly-shaped gland in the front of your neck. It produces thyroid hormones which travels via your blood to all the parts of your body. This is important because the thyroid hormones help your body work. They control how your body uses food for energy and can affect your metabolism rate, which means it controls how fast or slow your organs (like brain, heart, muscles etc) work. If your body’s clock is too fast or slow then you won’t feel well. This means that you don’t have enough, or you have too much, thyroid hormone.

You may know a couple of older folk who have a thyroid problem. To my knowledge adults can suffer from over or under performing thyroids as they grow older. These adults probably drink thyroid pills to help regulate the hormone in their bodies, and they are fine and dandy. But it’s much more serious when a baby or child is affected by an inconsistent thyroid.
You see, babies NEED the hormone to be consistent and stable in their bodies, so that they can grow and develop when they are meant to. If a small body is without the hormone for a little bit too long, then it could mean that they would miss a very important developmental stage, which could affect them in the long run. Sometimes CH affects a child’s development in such a big way that it results to autism or other big developmental delays that affects their speech and mobility. Muscle tone is also affected by CH and some kids cannot walk or start walking at an older age.

The doctor told me to avoid Googling it, because the cases on the internet are very severe and are based on the fact that those babies were not treated early enough. But I am much stronger now, so while checking out info for this post, this is what I found:

Infants born with this condition are normally either premature or they are born after term.
Symptoms, after birth, include:
Decrease in activity – they are very lethargic
Heavily jaundiced
Hoarse cry
Unable to breast feed
Small stature and poor growth
Coarse facial features
Developmental delay
Cool and dry skin
Umbilical hernia
Among other things.
The pics freaked me out. My baby did not look like that, and I did not want her to!

You know, this is the part where I say BUT GOD.
I am so thankful that during really crappy times, my autopilot kicks in and I begin to remember all the things He has promised me in the past. God does not ever change His mind or say things that aren’t true. So I began to remember all His promises – that He is always with us and that when things don’t make sense then we should just cling to Him because that is the only way our negative can turn into a positive! You see, it’s hard to be negative when the promises of God are engraved in your heart. And God does not end things on a negative. He turns it around for your good and for His glory. And this is a fact.

We win! 
And so we put on our armor, grabbed our swords and faced this “condition” with determination and not resignation. We began to learn all we could about Congenital Hypothyroidism. We learnt that there are hundreds of children all over the world who have CH and they are fine! I joined a few support groups and met adults who were diagnosed with the condition at birth and started treatment at a few days old – they are perfectly healthy now! We also learnt how to monitor and control the hormone. In order to make sure that she has enough thyroid hormone in her body, she has to go for blood draws every 3 months (which sucks). The “blood place” (as we’ve started to call it) would then run tests and our doctor would let us know if her meds should be adjusted.

We now see each win as a sign that God is fighting on our behalf and all we need to do is rest in Him. For instance, after having to increase her meds a few times over the past year, last week we were told that her hormones are stable, so we don’t need to increase at all! Woohoo! At the moment she is on one little thyroid pill per day – we crush it and feed it to her in the morning, via a spoon. She’s a pro at opening her mouth for it already. Eventually she’ll probably chew it, like she would a multi-vitamin. Once she’s taken her pill, we forget that Congenital Hypothyroidism exists and life goes on, happily and merrily. Because our wonderful doctor picked up the deficiency in her blood, when she was a day old, she was fortunately put on her meds quickly and therefore did not suffer any delays at all.
She is 100% on track and doing so well.

There are other wins that we got to celebrate within the first week of her life. Like the fact that our girl did not have a problem with breastfeeding. Ask my nipples. They bare the battle scars. CH babies struggle to breastfeed, and she could with ease. That’s a big win right there!

Another is that she has never ever been lethargic or without energy. We have the sleepless nights as proof, just like any other parent of a newborn baby. In fact, besides for the jaundice that went away after a couple of days and the umbilical hernia that eventually went away (her belly button stuck out a bit for a while), you would never believe that this girl has any kind of “condition” at all.

Our miracle girl is growing wonderfully and is picking up weight (which is a big deal) and she has way to much energy! At 12 months and 1 week she knows when to say the “woof woof” part in ‘How much is that doggy in the window’ and she can show you exactly where, when you ask “Where’s your nose?” (so no developmental delay). Her favorite word is “dada” – which she sings in 10 different versions, based on how excited or amused her dad is making her. (speech is a big deal too).

There is NOTHING wrong with our girl.
She is still perfect. Still beautiful. Still fearfully and wonderfully made!
Thyroid shmyroid.

For a long time I wanted to keep this under wraps – I did not want people to know about it for fear that they would pity us or speak negativity into the situation. But after a while, when I realized that, “hey, guess what thyroid, we win!” I started to get more and more comfortable with sharing information about the condition with others.

Sharing is caring! Knowledge is power! And I never know how our story could equip someone else to help another who might be faced with a similar situation and is in need of comfort or wisdom. I believe that God wants us to be a blessing to others. And that does not necessarily mean that I am giving someone money or things. Sometimes that means that by sharing how I have overcome something, it will give another person the courage to overcome whatever they are going through too.

I pray that my girl will always remember that she is an overcomer and that her story will help her to change the lives of many one day!

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