Supporting your child with Down syndrome during hospital visits: Parent tips

Hospital visits, whether planned or unexpected, can feel daunting for children with Down syndrome and their families. New environments, busy staff, unfamiliar equipment and changes to routine can all be tricky to navigate. Many parents in our community have told us that preparing their child and creating a sense of safety can make a huge difference. 

That’s why we asked families to share their experiences, comfort items, strategies and positive hospital interactions. Here’s what they told us, along with additional ideas to help your child feel secure, understood and supported. 

1. Kind, consistent staff make a world of difference

Several parents mentioned how invaluable supportive nurses and teams have been during hospital stays. 

One parent shared: 

“We have a few nurses that have been amazing for my little one… they advocate a lot for us. Where doctors don’t listen, they will step up for us.” 

When hospital staff understand your child, communicate clearly and advocate on their behalf, the whole experience becomes far less stressful. 

2. Comfort items can transform an appointment

Familiar toys and objects can provide reassurance and act as helpful distractions. 

One parent told us: 

“When ‘D’ was a baby, we always took ‘Dingo’ to every appointment… it was our little life saver. Once he was older, Sloth the Linkamal went everywhere.” 

Another parent added the importance of packing more than you think you’ll need: 

“Take all you need for at least 48 hours… that toy or extra milk or comforter makes a difference.” 

Whether it’s a favourite teddy, music, sensory toy or book, having these items close by can anchor children in a strange environment. 

3. Use role play to prepare for appointments

Overwhelmingly, parents highlighted how role play helps demystify hospital procedures. 

One family shared: 

“We bought a doctor’s play kit and role play at home… ‘O’ is much more at ease now and even wants to do it himself!” 

Others echoed similar experiences: 

“Play with a doctor’s kit and baby or teddy… some doctors even let him have a go first, which turns it into a play session.” 

For some children, using actual medical equipment at home helped even more: 

“ ‘R’ has real oxygen masks and scrubs! We’ve always explained what will happen and pretended at home. Making it fun has really helped.” 

Modelling procedures with toys – blood pressure cuffs, sats probes, stethoscopes – can build trust and predictability. 

3. Use social stories and specialist support

For children who need more structured preparation, social stories and play therapists can be highly effective. 

One parent explained: 

“A play therapist used a social story to support him before surgery… we also had reasonable adjustments so both parents could go to theatre and recovery.” 

Others praised learning disability nurses for coordinating care, advocating for the child and helping everyone feel calm: 

“The LD nurse organised everything, made a social story, and captured his likes and dislikes. The whole team went above and beyond.” 

Some hospitals also display visual guides showing what will happen during a procedure or stay: 

“The RVI had a fab social story on their board outside – it really helped ‘R’ understand.” 

These tools reduce uncertainty and give children a clear sense of the sequence of events. 

4. Advocate for your child and ask about adjustments

Parents emphasised that you can request changes to make the hospital environment more accessible and manageable. 

For example: 

“Don’t be afraid to advocate… tell professionals if you don’t think your child can handle a procedure and discuss other options.” 

Other helpful adjustments included: 

• Asking to take unused equipment home for desensitisation.
• Using numbing creams (like Emla) and planning ahead for blood tests. 
• Requesting creams, coverings or alternative probes for sleep tests. 
• Contacting the hospital’s learning disability nurse in advance. 
• Creating or using a hospital passport. 

Even small changes – dimmed lights, quieter corridors, longer appointment slots – can greatly reduce stress. 

5. Keep procedures out of their bed space

One parent shared a powerful tip about maintaining a child’s sense of safety: 

“Wherever possible, don’t allow invasive procedures to occur in their own room or bed… this ensures they can relax and feel safe.” 

They also recommended creating positive memories, such as: 

• making photo books about past procedures, 
• using dolls to “practice” MRIs, nebulisers, cannulas and oxygen, 
• and bringing familiar bedding or pillows from home.

These strategies help shift the focus from fear to familiarity. 

6. Bring comfort, food, distraction – and their teddy

Sometimes it’s the simple things that make the biggest difference. 

One parent shared how helpful teddy role play can be: 

“Last time we went, we took his teddy so the nurse could demo what she was going to do on the teddy first… it really helped.” 

Another added: 

“Take favourite snacks in a lunch box to encourage eating afterwards.” 

From bubbles to books, from iPads to sensory toys, the right distraction can turn a difficult moment into a manageable one. 

Additional tips for supporting hospital visits 

Prepare together – use photos, videos, books or social stories to explain what will happen. 

Pack for flexibility – even for day appointments, bring enough for an overnight stay – just in case. 

Build familiarity – practise with toy or real equipment at home, use visual schedules and rehearse step-by-step routines. 

Explore hospital support – Many hospitals have: 

• play therapy teams, 
• learning disability nurses, 
• quiet rooms,
• and pre-visits for familiarisation. 

These services exist to help – don’t hesitate to ask. 

You’re not alone 

Hospital visits can be challenging, but with preparation, support and the right adjustments, they can also be positive, empowering experiences. 

Our community’s stories show that even small ideas – a favourite comforter, a kind nurse, a simple social story – can make an enormous difference. 

Have a tip or story you’d like to add? Join our conversation every Tuesday in our private Facebook groups during Top Tips Tuesday. Your insight may be exactly what another parent needs to hear.