The Doctor came back without my baby, she was quiet and looked uncomfortable. So many scenarios were running through my mind but I didn’t expect her to say she suspected my son had Bilateral Congenital Cataracts.
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My heart sank when I saw the doctor, she had a look on her face that read ‘bad news’ and as soon as I saw it, my head went into overdrive. She explained what she’d seen when completing the newborn checks. She explained that when she looked into his eyes she didn’t get the light reflection she wanted. I remember trying so hard to listen and comprehend what she was saying but none of it was staying in my mind long enough to process it all. After each sentence she spoke, I’d have more questions. But all I could say was “Is cataracts genetic? Is it from me?”
As I asked, but I knew - despite being told it wasn’t heritable my entire life, I knew that had been a mistake. I instantly kicked myself for it. I felt guilty. How could I be so naive to believe medicine I was told years ago? Why did no one tell me during pregnancy? Why didn’t I think? The doctor left. My happiness left with her.
I’d always been told that my condition was a fluke genetic mutation and wasn’t heritable. How wrong were they? Medicine 30 years ago had allowed me to unknowingly pass BCC to my child. He didn’t ask for this. He already had prematurity and jaundice to deal with - did he need something else to build his character too?
I remember feeling incredibly lonely. I didn’t know who to talk to because no one knew how I felt. However, I called my partner and I told him what I could remember. I was crying because everyone could hear my private conversation. Everyone could hear but no one was talking. I was lonely because in July, 2020 postpartum wards didn’t allow visitors so all the new mums around me were alone too - I was probably the next door soap opera for them all to listen in on.
The emotional rollercoaster eased when I dried my eyes. That’s when I put on my mum armer on and started to look at everything more rationally. What did this mean for him? When can we get an ophthalmologist (eye specialist) to confirm diagnosis? When can we book an operation date?
The consultant of Brighton Eye Hospital saw Linden that day and her expertise identified that it wasn’t one eye - it was both. That didn’t help the heart ache but we were getting clarity on the condition which was the best thing for us all. He had bilateral congenital cataracts which is prenatal cloudiness of the lens in both eyes. They were fully developed so he currently couldn’t see until they were removed via operation. A life changing procedure was needed; this called for a referral to Great Ormond Street Hospital for Children. The phone call telling me this made the future feel brighter as it felt familiar. I’d stayed at GOSH twice as a little girl.
Ten days later, we are setting off at 5am to drive up to London. We met our consultant and our little boys’ health care was mapped out and my questions would be answered. The Professor had a wealth of experience and years of researching the condition - he was the best we could have asked for. He set out a timeframe for our baby’s operation and what may happen after.
The car ride home after all the administrative tasks was a strange one. We’d recruited the grandparents for this. Someone else could do the practical task of driving whilst us parents processed the emotion. I was so grateful because they spent time with my partner whilst I was in the hospital. Restrictions asked patients to only have one carer with them so Dad would be alone if it wasn’t for them. We sat next to each other in the car while the baby slept and just sat in silence - silence cut with the murmur of a breast pump going under my clothes.
A phone call a week before told us theatres were more restricted for time than normal circumstance so our 2 night stay turned into an 8 night stint in London. Am I able to support him through two operations when I thought I could only support him through one? How much more clothing and feeding bits did we need to bring?
The train was caught, the bags were packed, and the hotel checked into. We made it. We got the Covid test and the negative result we needed. I was so pleased Dad could join us. Our baby had twice the cuddles and good luck wishes and the parents had each other.
A few days into our stay and my medela broke. It lost suction and wasn't collecting milk like normal. It wasn't good but what was good was medela customer service. I reached out and explained where I was and how I needed a fix asap and they helped me straight away. I was so grateful. They saw I was a mum stuck in a hotel room during covid awaiting my sons operation - they knew it was not the best time for my pump to not do it's job.
We arrived and were shown our hospital room. Relief as our baby would have peace and quiet at night time and I’d be able to pump without having to explain it to inquisitive older children. Speaking of pumping, the nurse looking after our baby offered me use of a hospital grade pump - rather than my little one. Yes please - I need all the help I can get with all this stress.
We had to sign consent forms whilst looking down at our Little Pumpling. It was one of those parental tasks where you know it’s going to hurt them, it’s going to scare them and there’s a risk of danger but you have to do it. You have to do it for the life changing opportunities that the pain brings.
Let me describe my feelings after doing this three times now. The lift takes forever to arrive and it takes even longer to go down 2 floors to the theatre. The corridor leading to those double doors is really long but not long enough to give your baby enough of those kisses that will fill them with strength. The double doors are heavy, even if you don’t open them yourself. The reception area is overwhelmingly busy with extremely intelligent medical staff chatting constantly amongst themselves. You feel like an extra in a movie set as they all get on with their responsibilities. The nurse leading the way is key - without them you’d know nothing, you’d never know where to go or what is happening. The room you walk into is surprisingly small, yet the team inside it who are gathered round the bed are tall. You feel small. They are warm and they make you feel calm. The chair they ask you to sit on whilst holding your baby is the hardest chair you’ll ever sit on. You know in a few seconds you’ll be out of there and your baby will be with other people. The kiss goodbye is the sweetest kiss.
We got a call whilst I was pumping and my partner was sitting outside a local cafe. Time to unplug. It was time to get you back. And back you came, in a big bundle of blankets and wires. What do you do next? You sit and you stare. We were told to feed him so that’s all I did, just a little bottle of breast milk slowly feeding bit by bit.
I’ll never take for granted what life feels like to him. He can see more and more with each vision check we attend but I still describe life to him. I still explain so he can learn life audibly and haptically - the visual world is a bonus. Visual impairment affects your entire world and I never want to forget that. We’ve no idea how good his corrected vision will be in the future. I’m just hoping that he is over the worst of it after 4 Covid tests, 3 operations, hundreds of eye drops and patching.