Welcome to Willow’s World – by Vikki Pritchard

We welcomed Willow into our family in March 2023, following all the normal scans and tests this journey was set to be the same as my other 2, however as soon as Willow was born and passed to daddy, he immediately knew something wasn’t quite right.

Willows left eye was not opening like her right, upon asking the midwife she passed it off as just a sticky eye and that the consultant will check when they do their new-born checks.

An anxious few hours later everything seemed to ramp up the consultant couldn’t get the eye clean or open, he called for a colleague to support and it was casually mentioned that she may either have no eyeball or a very small eyeball in the socket, they then checked the right eye and this had a white covering over and again a casual mention of a cataract as one thing was something they hadn’t seen before we would have to wait over the weekend to see an ophthalmologist on the Monday.

After worrying all weekend and having the urge to google everything it was time to see the ophthalmologist, she took willow for an ultrasound and booked an mri for that day, she was very blunt and said she hadn’t come across a child like this and we would have to be referred to a specialist in London, she wasn’t sure who it would be but we would hear from someone further down the line. We were sent home to wait with no further information, this was so hard going home, explaining to the family the very little we knew, trying to enjoy our baby bubble with lots of worry in the background.

Let’s skip 3 months, we were finally contacted by Great Ormond Street and offered an ophthalmology appointment 2 weeks later, we made the journey with a little sick feeling in our stomachs not knowing what the next few hours would bring.

Once at the hospital we were introduced to 2 consultants that would be looking after her, oddly one for the right eye and one for left. They asked questions about the pregnancy and birth and then explained the results of the MRI and ultrasound done at the local hospital, this showed a missing eyeball in the left socket known as Anophthalmia we spoke with the consultant and was advised we could start prosthetic moulding for the left eye to give a symmetrical look to the face and help with bone growth around the eye socket this would continue as she got older, the right eye had an eyeball but this was showing as not to have grown correctly, this sparking more test e.g. eegs and recording no visually activity. I felt so sorry for this little 3-month-old that was being pulled and poked at and not knowing why.

We left that day with so much information it took us a while as a family to understand the start to this journey and what Willows world would look like. We spent the next 6 months having many appointments with different care teams, getting to know different charities that can support us and how Willows life would get started. Everything became quite overwhelming and I didn’t know how to channel some of these feelings, so I started an Instagram page @willows_world2023 where I shared the start of our journey as a family living with a blind child.

Please do give us a follow and come along for the ride.