Understanding congenital thyroid conditions - what every parent needs to know
Having a baby is a big deal in itself, and there’s so much to think about. So it’s no surprise that learning that your baby has a thyroid condition can feel terrifying for many parents.
While congenital thyroid disease sounds like a big, scary diagnosis? There’s plenty that can be done, and if it’s detected early and given the right support, your child will likely go on and live a happy, healthy life.
If you’re feeling overwhelmed at your baby’s diagnosis or even if you’re a parent-to-be who wants to know more about this? Let’s go through the basics of what you want to understand.
What is congenital hypothyroidism?
Congenital hypothyroidism, or CH, is when a baby’s thyroid gland is not working properly or is missing completely.
The thyroid is a small gland in the neck that has a big role to play in wellbeing, particularly in growing bodies. It’s involved in growth, brain development and metabolism. So when it’s not producing enough thyroid hormone, it can have a massive impact on how a baby grows and develops over the first few years of life.
There are a few ways CH occurs:
The thyroid gland doesn’t develop at all in utero
The thyroid gland doesn’t develop properly in utero
Genetics affect the thyroid’s ability to produce hormones
In some cases, maternal thyroid antibodies blocking thyroid function
There are some factors that we know can affect the risk of congenital hypothyroidism such as iodine intake during pregnancy. And of course, minimising your antibodies if you have a thyroid disorder is a priority during pregnancy. But in many cases, we don’t know all of the factors that have caused the condition. And it’s important to remember that it’s not something you did deliberately to your little one.
How is it diagnosed?
This depends on where you live. Here in Australia, all newborns who undergo the heel prick test in the first few days after birth are screened for thyroid conditions. This way, they can pick up on a thyroid disorder before the symptoms even surface and begin treatment immediately.
If the test screening picks up an abnormal result, more testing will be done to confirm the diagnosis. The earlier the diagnosis, the less of an effect it has on your baby’s long-term health and development.
Signs and symptoms of congenital hypothyroidism
Most babies with this condition will show no symptoms to begin with. This is why the screening takes place as early as it does – to pick up on it before symptoms develop.
Symptoms can include:
Prolonged jaundice
Poor feeding
Low energy and lethargy
Constipation
Puffy face
Swollen tongue
Low muscle tone
However, there are many things that can cause these symptoms. So it’s best to seek advice if you’re concerned about your little one. Always trust your instincts, even if you think you’re just overreacting!
Why is early treatment critical?
Thyroid hormones are probably amongst the most essential hormones for babies. They play a major role in brain development, particularly in the first 2 years of life. Without enough thyroid hormone to power their growth, babies could have delays in both physical and cognitive development.
The good news is that treatment is simple. Each day you will need to give your baby a small dose of thyroid hormone medication that acts as a replacement for the missing hormones. Most babies respond well to treatment, and the daily dose soon becomes a part of your morning routine with your little one.
What happens from there?
When a baby has CH, they do need more frequent monitoring and testing to ensure everything is progressing well.
Your baby will need regular blood tests to make sure the medication is at the right dose, particularly for the first year. Your healthcare team may also schedule more frequent check-ins for your baby’s growth, milestones and overall wellbeing.
Around age 3, your doctor may reevaluate your baby’s thyroid function and see if the condition is permanent or temporary. But even if it’s a lifelong thyroid condition, your child will likely thrive and live a full healthy life, as long as they receive appropriate treatment.
Tips for supporting yourself and your family with this diagnosis
New parenthood is tough enough as it is. Once you add a diagnosis to a brand-new baby, it can be emotional and confusing for all involved.
So here are some tips to help you navigate this murky time:
Ask your healthcare team to explain everything clearly, and ask for clarification any time you’re unsure – it’s ok to need to hear it over and over until you understand!
Write down questions before appointments, particularly if there is anything worrying you
Build the daily medication into a routine that works for your family
Connect with other parents of children with CH if you feel the need for peer support
Find time to take care of your own wellbeing as well – this is enough of a juggle with a new baby, let alone a baby with a medical condition, but looking after you will flow through and help you to make better choices for your family