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.