A condition few people are aware of probably due to the fact that only one in 4000 babies are born with the condition. It is a condition whereby the child either doesn’t have a thyroid gland or has one that isn’t functioning properly. As the body isn’t producing enough hormone (thyroxin), medication is given as a hormone replacement.
While treating the condition is relatively simple by giving the correct level of thyroxin replacement, giving the correct dose can be slightly more difficult to achieve because the child is still growing therefore the levels of thyroxin changes.
Congenital hypothyroidism can usually be picked up after the baby has had the heal prick test at six days. If this test shows a positive result, a repeat blood test will be done to confirm this and medication is given immediately. Each time the medication is changed the child will be required to have blood test to determine the correct level of thyroxin is given.
The blood test measures the thyroxin (T4) level present in the body and the level of brain hormone (TSH) present at that time. Thyroxin is produced by the thyroid gland found in the neck. Thyroxin travels through the body in the bloodstream. It helps to maintain the body’s metabolism at the correct level. TSH is the hormone from the brain (pituitary gland) which controls the thyroid gland which in turn produces thyroxin. If the thyroid gland is not producing enough thyroxin (under active) then more TSH will be released into the bloodstream by the pituitary gland to try and stimulate the thyroid gland to produce more thyroxin
It can be traumatic to say the least for both parents and child to come to terms with the fact that they are facing a lifetime of taking medication daily coupled with regular blood tests and routine check-ups to determine all other growth related matters are also fine as well as monitoring the thyroxin dosage given to the child.
As a parent of a child who, was diagnosed, with the condition over nine years ago, I would like to share some of her thoughts on what she feels like to have this condition.
My name is Saahirah and I am nine years old. I have been taking thyroxin since I was a baby. Sometimes it’s hard to remember to take my tablets especially in the morning when we are rushing to go to school. My doctor, Dr Allagoa says I need to keep it by my bedside and have it first thing in the morning. What is worse now is that I have to try and swallow the tablet. Apart from my Grandmas house (they always have some) I have to take the tablets with me if I stay over anywhere.
I have to see my Doctor at Dewsbury Hospital every six months and have blood test done at least a week before the appointment date. Before I can go for the blood test I have to make sure that I have my medicine properly for at least two weeks to make sure that they get an accurate result or they will want to do it again.
The doctor picks which hand they want to do it on and try to find a thick and juicy vain. They put cream on the back of my hands to make it go numb so I don’t feel anything. The last blood test didn’t go very well because they couldn’t get any blood out and they had to try again and then it wouldn’t stop bleeding. I was left with a big lumpy bruise and it was still hurting a month later. I also remember the one before that when the doctor decided to use spray instead of cream and it was so, so painful. I couldn’t pick anything up afterwards.
The best thing about it all is I get to go to the White Rose restaurant afterwards if it is dinner time and eat there.
Overall, I would describe my daughter as a lively and energetic girl who wants to do all those things any nine year old wants to do and would love to be in touch with anyone else with the same condition. I do thank modern medication and technology that a simple test can determine and treat this condition. Had this not been the case the outcome for my daughter’s future could have been very different as it is vital that treatment is started as soon as possible to prevent developmental delays.
