The first 12 months - supporting your baby’s congenital thyroid disorder
After a diagnosis of congenital thyroid disorder, the first year often feels like a blur of appointments, tests and monitoring. So knowing what to expect can give you some relief and allow you to focus on bonding with your baby and establishing your rhythm as a family.
So here is what you can expect in the first 12 months with a congenital hypothyroidism diagnosis plus how you can support your baby along the journey.
My baby has been diagnosed with congenital hypothyroidism - what now?
Most children start thyroid hormone replacement (usually thyroxine) soon after diagnosis. This helps support healthy brain development and growth from the very beginning.
Here’s what to expect in the early months:
Regular blood tests to check hormone levels and adjust doses
Close tracking of weight, length, and development
Regular appointments with your baby's paediatrician or paediatric endocrinologist
Honestly - a lot of late-night panicking, obsessing over symptoms and frantic Googling of 'is this normal?'
Although it does take time to adjust, please remember that most CH babies will go on to thrive and live long, happy, healthy lives! So don't forget to look after yourself too.
What about developmental milestones?
Most babies with CH will meet their milestones when well-managed. But your doctor may still ask you track milestones such as:
Head control
Rolling, crawling, walking
Eye contact and social engagement
Speech and sound development
If you feel like your baby isn’t on track or you’re not certain? Early intervention is always best, so speak to your baby’s healthcare team as soon as you can.
Important checkpoints for congenital hypothyroidism
At 6 months and 12 months, your baby’s doctor will likely perform a more thorough assessment of their condition. This can include:
Reassessing the medication dose and ensuring it’s sufficient to support their development
Monitoring milestones and developmental progress overall
Identifying if any additional support is needed such as physiotherapy or speech therapy
Keep in mind, these aren’t about a pass or fail of how you’ve taken care of your baby. It is simply to give them the support they need based on how their condition is affecting their progress.
How do I give my baby thyroid medication?
Giving medicine to a baby might feel intimidating at first, but parents often find it gets easier after the first few months. In the meantime, here are some helpful tips to get you started:
Give the medication at a consistent time each day - most find first thing in the morning works best
Dose on an empty stomach if possible
Give as per your doctor's advice - here in Australia, a crushed tablet and mixed in a small amount of breastmilk/formula is the standard recommendation, but some countries use a liquid form
If possible, avoid soy formula use, as it can interfere with uptake of the medication
Don't worry about the occasional spit-up afterwards - a single dose doesn't make or break their wellbeing!
When in doubt, get in contact with your team. You're always best off trusting your gut & asking questions when it comes to your baby's health!
Missed a dose? Don’t panic – just return to your regular dose the next day as per your doctor’s instructions. One missed dose won’t make a significant impact.
How to support your baby’s congenital hypothyroidism naturally
In CH, thyroid medication does the most vital job – replacing the low or missing hormones. But there are still other steps you can take to support your baby’s health overall and reduce the impact of the condition.
They include:
Prioritise good sleep – for both you and baby! Yes, you can only do so much to influence baby’s sleep, especially in the earlier months. But the more rest they get, the easier it is for them to convert T4 into the active form T3 which they need to growth and thrive
Start with wholefoods – when it’s time to start solids, focus on nutrient-dense, easily digestible foods. These provide vital thyroid nutrients
Support gut health – provide breastmilk if available, and once solids are introduced, you can include small amounts of fermented foods along with prebiotic-rich options such as oats and berries
Minimise exposure to unnecessary chemicals and toxins – opt for natural and organic products whenever possible. Your baby’s liver is already processing medication and needs to convert T4 to T3, so you don’t want to add to that load if possible