Be gentle on yourselves
It takes time to get used to this kind of news and you may need emotional support while you adjust. But don’t despair – all our babies are growing up just fine! They may need more support and lots of hospital visits but that doesn’t stop them being just as adorable and mischievous as any other child. Meet Alfie here.
You are not alone.
We have a wonderful bunch of parents whose babies, children and teenagers have all types of hypoparathyroidism. Hearing that your child has a lifelong condition can have a devastating impact on you at first but when the shock has worn off you’re going to want to know what you can do to help your child.
Talking to others who have been through a similar situation and can offer practical advice can be enormously reassuring. Come and meet them in our facebook support group at Hypopara@Parathyroid UK Group.( Sign up via our website.)
‘I remember thinking, ‘Oh it’s only low calcium,’ and we were given tablets and told he would live a normal life on this medication.
If your child’s hypopara has manifested itself later in life they will need your help to understand the condition and how it will impact them. It may be hard for them to talk about it but keep the lines of communication open, chat while doing other activities, talk to their teacher and give them time to adjust.
We have experience of newborn urgent referrals, ongoing support, and specialist paediatric endocrinologists with whom we work closely to ensure the best possible care. We will soon be publishing information leaflets for parents, and one for older children and teenagers, and there will be a dedicated section on the website for you too.