Here, Fiona, 40 tells the story in her own words.
Pointing to the grainy image on the screen, our two-year-old daughter, Alba, lit up. ‘There’s a baby in your tummy!’ she beamed. ‘Yes, there is,’ I laughed.
Excited about being a big sister, she’d come along to the 20-week scan with my fiancé, Stevie, and me.We didn’t want to know what we were having, we were just happy to find out our bub was healthy. But by 28 weeks I was so big, my obstetrician wanted to do another scan. This time, it showed a possible abnormality, so I had a foetal MRI. Then I got the worst phone call of my life. ‘There’s something wrong with your baby,’ I was told. ‘Bring your partner.’
At the hospital, Stevie and I were taken to a private room where another obstetrician broke the news. ‘Your baby’s going to be born with no eyes,’ he said. ‘Blind?’ I asked, trying to comprehend it. Our little boy or girl would never see our faces.
After the initial shock, I just wanted to know our battler would receive the best care. A meeting was set up with a range of specialists and we were told the condition is called anophthalmia.‘Will the bub know day and night?’ I asked. ‘How will it learn?’ ‘In its own unique way,’ one of the specialists said.From that moment, that’s how we saw it – our baby was unique.
‘It’s been gifted to us to look after,’ I said to Stevie. Not wanting Alba to think of her sibling as being any different, we didn’t tell her.
Last January, Stevie was by my side as I had a caesarean. Then a gorgeous little boy was placed on my chest.
‘He’s perfect,’ I grinned. We called him Archibald, meaning strong and brave.The next day, my friend brought Alba to meet her brother. ‘Mummy, he’s got no eyes,’ she said.‘No, he hasn’t. He’s very special,’ I replied. ‘Can I go to the shop and buy him some?’ she asked. ‘No, we can’t do that,’ I explained gently. ‘He might get some when he’s older, but he’ll never see, so we’re going to help him.’
Soon after, Archie was also diagnosed with SOX2 syndrome. It meant that as well as blindness he would suffer slow growth and delayed development. His specific mutation is so rare, there’s only one other recorded case in the world.
‘He’s my miracle man,’ I said, amazed by him. In time, conformers – oval-shaped plastic shells – were put into Archie’s sockets to stretch them ready for prosthetic eyes.Because of mild hearing loss, he got hearing aids, and a nasogastric tube was fitted to help him feed. He had physio as well, to help him get stronger.
Despite everything, Archie was such a happy little boy. One of the most important things we could do was talk to him constantly, so he knew where we were. So protective, Alba understood perfectly. In the bath, she said, ‘Archie, can I pour water on your tummy please?’
Trickling it over him, she waited for his big smile, which meant he liked it. Once when I scooped him into my arms without warning, Alba scolded me.‘Mummy, you haven’t said, “Archie I’m going to pick you up,”’ she reminded me. Not everyone was so accepting. Some people I spoke to said it was a shame that he didn’t have eyes.‘This is the way he was born and we’re empowering the person he is,’ I told them.
When Archie was six months old, we flew to the UK, where we’re from, to get married. It was such a proud moment when my godson pulled a beaming Archie down the aisle in a cart. Back home, he learned to reach out for his sensory toys. But he couldn’t crawl or lift his head – he had no reason to with nothing to see. So we worked hard in daily therapy sessions. It meant I couldn’t return to work full time and we began to struggle.
Desperate to give Archie the best start, we set up a GoFundMe page. We were overwhelmed when more than $68,000 was donated in four weeks. It will help pay for even more therapy and specialist equipment to help stimulate Archie’s brain. But it could take years for him to reach his full potential, which is why we reluctantly asked for support.
This year, he’ll receive a prosthetic in his right eye and hydrogel in his left. It will extend over time to make the orbit bigger.
Archie is one now and so happy and content.He snuggles into me like a koala and laughs when Alba rubs her nose on his.‘Alby’s here and will always be here,’ she says. It’s like she was supposed to be his sister.
Having Archie has changed all our lives for the better. The staff at the Mona Vale Hospital paediatric unit have become like family and given us hope that blindness won’t hold him back.I want other families who might be at the beginning of their journey with a visually impaired bub to know there is a good, happy life ahead.
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