My baby son - the story so far!

Hi everyone. I am here to write a blog about my son James who is 6 months old.

He has congenital hypothyroidism dyshormonogenesis. Which basically means he was born with an underactive thyroid as a result of a rare genetic condition.

Already in James' short life we have been on a rollercoaster ride of emotions with him because of his condition. Following the joys of having a new born baby I had a devastating telephone call out of the blue when he was 12 days old from a Consultant Paediatrician following his routine heel prick test. I was told that he had a thyroid problem and I had to take him to hospital as soon as possible. It felt like a very bad nightmare.

A long story short, James went to hospital and had a blood test (which was horrific to see) and booked in for a scan of his thyroid gland in 3 days times. I was told that he would be on medication for the rest of his life and I had to start giving him levothyroxine immediately. I was gutted. My husband and I spent that weekend being very upset and trawling the internet for information. From the information I found I convinced myself that James would have a learning disability. I felt confused, angry and heartbroken. My baby didn't seem the same to me anymore. It was awful having to tell family about it. We had a lot of support but everyone seemed to want to fix the problem and tell us it would be fine but no one seemed to understand that we felt terribly upset and needed time to cry and get through the shock of our seemingly perfect baby having a health problem that we knew nothing about.

After 2 scans of his thyroid gland, we were told that it did not work at all. We have to go and take James for regular blood tests, which I hate, as they can never find a vein and James screams and I cry. It gets harder each time we take him. The next test is 17 May which I am dreading.

The good news is that James' T3 and T4 levels are pretty much spot on now thanks to his medication and we just need to keep it that way and he will go on to live a perfectly normal life as long as he takes his medication.

Would like to hear from any other parents going through similar situations particularly.

4 Replies

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  • Thanks for such a useful personal story - I'm sure it will be really useful for anyone who has to go through anything like what you have dealt with

  • Thank you Matt. I hope that I can continue to share my experiences with others. Today I registered James and his sister at a nursery and I had to write on his paperwork about his condition since he often has bruises on his hands from blood tests. His condition is at the back of my mind most of the time but at times like that I feel sad for him but it could be so much worse so we are very lucky indeed.

  • hi rachel, just saw your blog concerning your baby james, I went through the same experience 22 years ago when I got the call after heel prick on my beautiful baby girl. Pleased to say that she developed very well did well at school and now holds down a good job. Since puberty she does have a few problems but we are addressing these and hopefully will get them sorted. so just enjoy your son and don't worry too much about the future looks good for james. xx

  • Hi, my story a little different I spent about 10 days back and to hospital, Gp MHD direct with my very poorly 2 year old who wouldn't eat and drink to be sent away being told to hold her down for further few days and force fluids down with oral syringe being told she had a virus and that they wouldn't give her a drip. Anyway long story short she had an undiagnosed retro pharyngeal and by the time they listened to me her thyroid filled her throat area too. Terrible time and I can totally empathise with the traumatic blood tests getting me to hold her down for up to an hour at times while they jabbed away unable to put a line into her tiny dehydrated veins, it's heartbreaking and made me feel so helpless.

    Any way she has been left with acquired hypothyroidism ( de quervains )and is on thyroxine. The blood test saga continues as they still take bloods about 3 monthly and each time go from arm to arm to heel to finger to get blood as they require the same amount if blood in April as an adult my daughter won't even drive past the hospital children's outpatients now without saying you not taking me there again are you mummy and won't even come to the docs for my appointments without cowering behind me.

    trauma and upset of knowing you're perfect little child is going to probably have to put up with this and take medicine for the rest of their life is a bitter pill to swallow and I find it hard when people say she's okay now isn't she. Because it doesn't feel that she is.

    On a positive note her bloods have been stable the last few times and she is now 3 and asks for her medicine and even reminds me when she has a sleepover at grandparent to pack it.

    She has come on leaps and bounds with speech and. Is growing at a rate of knots which is fab as she was always so tiny for her age prior to treatment. I still have questions but this site has been invaluable to me and I would like to thank all on here.

    If any one knows what the normal thyroid t4 t3 ranges are for a 3 yr old bloods I'd be grateful.

    Any way my 3 year old Leeds a normal life the main set back is me stressing over every fever ache and pain when she just gets on with it.

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