We were looking so forward to our 20 week gestational ultrasound, despite this being on the week we moved from far north Queensland to Melbourne! My partner had started a new job and was unable to attend the appointment, so I took mum. I was exhausted but excited before walking into the appointment. Half way through the scan the lady excused herself, saying "I'll be back in a minute", only to not return for 15 minutes. She popped her head into the room and said "Sorry for the delay, I am just waiting for the doctor".
DOCTOR!! WHAT!! WHAT IS WRONG???? OMG!! I started freaking out.
She came back into the room with the doctor, who gently told me that they thought they had seen a problem with one of the baby's eyes. The doctor then carried on to scan my tummy and confirmed what looked to be a unilateral cataract. He went on to say that he had never seen one of these before (!). I was referred back to my obstetrician, who set us up with a paediatric ophthalmologist and asked us to repeat the scan at 36 weeks to confirm.
We had numerous appointments to set up surgery at a hospital, 6 weeks after my delivery, pending final diagnosis upon birth. It seemed so surreal arranging surgery for something that wasn't born yet.
Luckily, or maybe unluckily, my partner is a surgeon and I am a nurse. So we got busy looking up the latest international best-practice for managing this condition and found ourselves very comforted by the level of care available to us in Australia. I don't think it has been advantageous to have 'inside knowledge', but perhaps a disadvantage in knowing the risk and complications and increasing our anxiety levels. We also have no idea why our baby developed a cataract. I had evidence of an old CMV virus in my blood, but perhaps this was just an old virus, given that I work in healthcare and catch things all the time.
In August 201x we had a beautiful baby girl.... with a right sided cataract. Luckily we had everything all organised, so at 7 days old we saw the surgeon, who arranged surgery for when she was 6 weeks old. The surgery went well, and the post-operative care smooth sailing (we are privately insured).
The lens application has been very challenging and has challenged our relationship as parents; it's a lot to get used to. I have put the lens in independently now over 5 times and am absolutely chuffed with myself each time. The patch therapy absolutely breaks my heart as she is wearing it 7am-7pm and when we take it off in the evening she lights up like a Christmas tree, smiling and laughing and engaging with all her toys. I feel so mean not letting her enjoy her vision and making her start life practically blind. My partner reminds me that it's a marathon, not a sprint.
Looking back, despite the anxiety of the unknown, we feel thankful we knew before her birth that we had all this to deal with. I am also grateful that we live in Melbourne, close to all the experts.
I have enjoyed hearing other people's stories, and meeting people going through a similar thing, if only to give me support and encouragement. This is why I have chosen to share our story, to give comfort to other parents.