Living With.....Congenital Hypothyroidism - The M Word

Living With…..Congenital Hypothyroidism

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When my daughter was about 10 days old, I got a phone call from Holles Street Hospital.

‘The heel prick test came back abnormal’.

I had never experienced shock before. It was like a kick in the stomach. I was breastfeeding my young daughter at the time and I remember looking down at how perfect she was.

‘Are you sure?’

We both attended Temple Street the next day. They said her TSH (Thyroid Stimulating Hormone) was high, above what it should be. She was not producing enough of the growth hormone thyroxine in her body.

This was the first time I had heard terminology I was to become very familiar with. A few nurses had to hold her down while they took blood from her tiny, perfect hand. (It is easier to find a vein on a baby’s hand). She cried so much, and I remember crying too, such tears, they welled up from a place I never knew existed.

A nurse handed me a leaflet on PND.  I remember wanting to scream – ‘It is not PND, but my little baby is being poked and prodded with a needle!’

A week later, we had to see the Endocrinology consultant in Temple Street. The day ward. It is a terrible thing to say but I felt a sense of alienation – like I wasn’t meant to be there. I didn’t have a sick child. In hindsight, was this denial?

They did a variety of tests, questioned me about her feeding, her alertness, her general health. All perfect. No problems at all.

Yet, the blood does not lie.

The endocrinology nurse came along later and asked me to sit down. I remember my daughter cooed and kicked her legs in the cot.

‘I have to tell you,’ she said, kindly but solemnly, ‘that your baby daughter has congenital hypothyroidism. It will be something she will have all her life and she will need to take medication every day.’ She paused and waited for a reaction. Maybe a squeal, a cry? Strangely, I was very calm, almost proactive, and asked her what I needed to do.

She told me that she would be on a daily dose of Eltroxin – a thyroxine replacing drug – but that the amount would vary depending on her growth.  I remember earnestly writing down the amount she needed and the instructions thus. A tricky enough business but so far so good.

Nonetheless, having congenital hyperthyroidism means you must get regular blood tests. They asked me to come back in one month to check her thyroid levels. On the next visit, everything was fine, and I was delighted she was absorbing the medicine well. Soon she only needed to get a blood test every six months.

Every visit was the same – they check weight and height, take a blood test in the phlebotomy department and ask about milestones. She was always well on course, reaching every physical, social, and language milestone well within and usually above what she was supposed to.

Yet I was not prepared for the emotional roller-coaster of it all. I remember going home on the first night she was diagnosed and Googling the words ‘congenital hypothyroidism’. To my horror, in the time before it was picked up on the heel prick test, it very often left children with a lack of the growth hormone thyroxine and led to learning difficulties or mental retardation.

Those words really affected me at the time. I worried so much about her. What if she didn’t grow?  What would she look like as a four-year-old, as an adult? It was a very stressful time.

The thing that got me through was listening to supportive people (my husband, sisters who are nurses), the professionals in Temple Street (not Dr. Google!) but mostly when I looked at my beautiful, extremely alert, curious, active daughter. Something inside me (mother’s instinct?) said she would be fine. We were lucky – she was born with a small thyroid – but it was in the wrong place – it is called an ectopic thyroid and happens at about the sixth week of pregnancy. Some babies are born entirely without a thyroid.

I felt huge guilt. What did I do on that sixth week? Eat shellfish, drink coffee? Turns out there was nothing I could do. I imagine if anyone out there who has a child with a health issue feels this. What could I have done differently? I always think to myself – I would never have had the wonderful daughter I do have if anything was different.

She is now aged 10 and is still attending Temple Street (now every six months).  For now, I can now tell you what congenital hypothyroidism looks like – articulate, clever (okay, we have the usual homework battles), very sporty (GAA, hockey, gymnastics – you name it), a social butterfly and basically a joy to have as a daughter. But don’t tell her I told you so.