Advice for early years

Parents of a baby or toddler with a growth disorder


The last few months to a year with your baby may have felt like a blur. A stream of health visits, vaccinations, sleepless nights and firsts of everything!
If you have recently found out your little one has a growth disorder, you may be wondering how the road ahead will look. How will it impact their life? How will you all cope? There is no simple answer to these questions, but it is important to know that you are not alone, and there are ways to prepare for the journey.

First steps beyond diagnosis

Confusion, anxiety, frustration and uncertainty. As a parent of a baby or toddler with a growth disorder, you may be experiencing mixed emotions. There’s no right or wrong way to feel, and everyone reacts differently. Coming to terms with your child’s diagnosis may be difficult, but it is just the first step towards adjusting to a new reality. A new journey is about to begin.

Tracy’s View

‘When they said that my daughter had a rare condition that would affect her growth, I was stunned.

I started to panic, wrongly assuming that she would never go to school, have a boyfriend, or get married.’

Life will be different for every parent, and some may face more challenges than others.

  • To help with negative emotions, sharing your own feelings with someone can help. Sometimes the most useful support is from talking to parents of a child with the same disorder.
  • Research your child’s disorder – talk to other parents about what they found useful, ask your doctor for any recommended reading, and search for relevant voluntary organisations and charities.
  • Don’t beat yourself up about milestones, focus on the ones they have already achieved.
  • Try to live in the moment and enjoy the good days – celebrate the highs, however small.
  • Take life one day at a time – try not to get weighed down by the worry of the future.
  • Look after yourself – get some rest, have a bath, go for a walk or catch up with friends.
  • Communicate – talking to your partner about your feelings is important for your mental and emotional well-being.

Emma’s View

I think it has brought us closer together. We are going through something together that no one else really understands. We have had to rely on one another and have learnt to appreciate each other more. We are stressed, tired and worried a lot of the time, but generally we support each other.’

Remember that you’re not alone and that many other families are going through similar challenges. There are a growing number of patient groups and organisations which can offer help and support. The International Coalition of Organizations Supporting Endocrine Patients or ‘ICOSEP’ provides information on a range of different support groups. Find out more:

Please note that we are not responsible for the content of the external websites.

Preparing for nursery or pre-school

Knowing your child will be attending nursery or pre-school one day might make you feel apprehensive, but there are a few of things you can do to prepare:

  • Nurseries or pre-schools will complete extensive checks before your little one starts. This includes big questions about health conditions through to their favourite toy! Use this opportunity to tell them about your concerns and don’t be afraid to go into a lot of detail.
  • Before you child starts pre-school, you can ask for an independent educational assessment. This not only encourages good communication between home and school, but also helps the teacher to get off on the right foot. Contact your local education authority for more information.
  • If you are worried about your child at school and worried that they may be bullied, it is worth having a conversation with pre-schools or schools about their anti-bullying policy and inclusive philosophy. That way you can select the right inclusive school for you and your child.

Learn more about growth by age

To find more advice and information about growth in specific age groups, explore the growth by age page.