Milton Keynes mother shares experiences of parenthood with sight loss

Posted Monday, 4 March 2024 Press release

Hannah Burgess, 26 from Milton Keynes has been sharing her experiences of being a mother with sight loss to mark Mothers’ Day (Sunday 10 March) with the Royal National Institute of Blind People (RNIB).

Hannah lives with her fiancé Charli and their two children Lyra, six and Leo, three. She has the sight conditions Albinism and Nystagmus, having been diagnosed with Albinism before she was six months old. She was registered blind when she was four years old.

One of the hardest parts of her pregnancies was getting others to understand her sight loss. Throughout both her pregnancies, and even now her children are older, Hannah says she felt questioned, underestimated and judged.

She said: “Being a new parent is incredibly hard, and when you have so many people openly saying they don’t think you’ll cope or be able to do things just adds another level of pressure.

“There is no test for Albinism in pregnancy, and whilst it wouldn’t have impacted the pregnancy if my baby had the same condition, no one seemed to know that apart from me. I had to sit through a lot of pointless conversations with consultants who didn’t seem to take the time to educate themselves, or even listen to me. That was tough to deal with because I worried if I hadn’t picked up on something, they wouldn’t pick it up either.”

Hannah says this experience taught her to trust her own instincts, and its something she’s continued as both her children have got older. She continued: “Doing what I believe is best for my children has gotten us this far, and I will carry on with that mindset.”

When she was growing up, her parents used to wear bright coloured clothes, to make it easier for her to spot them when they were out. These are techniques that Hannah has now adopted with Lyra and Leo, so she can spot them whilst at soft play or the park.

Hannah has her own TikTok channel, Blind Mum vs the World. She started the channel in 2020 and uses the platform to share her experiences of living with sight loss, motherhood and break down misconceptions of what it means to be blind.

Hannah said: “I started my Blind Mum vs the World channel after I posted a video on my personal Instagram showing my eyes movement due to Nystagmus. My friend had noticed similar movements in her daughter’s eyes. After seeing my video, we spoke and her daughter went onto be diagnosed with Nystagmus before she was six months old.

“This experience encouraged me to share my own experiences and try to help other parents who might be in a similar situation. That along with the fact I’ve had a lot of people underestimate me as a parent and ask how I’d cope being a blind mum led to me creating my channel.

“I adore what I do, and I love the community of support I’ve built. I love being a mother – it’s the best job in the world. Lyra and Leo are without a doubt my greatest achievement.”

For information and resources on parenting with sight loss, visit www.rnib.org.uk/living-with-sight-loss/independent-living/parenting.