Microphthalmia and Ava – Tracy, Tim and Jai’s story
“Is it still a princess?”
These were my first words after Ava was delivered. My partner looking every part the proud father looked over and said, she is still a girl!
While in recovery I was laying there thinking life couldn’t get any better, I had a gorgeous three year boy, a loving supporting husband, a house being built and now my very much wanted daughter.
Recovery was quick and then my nurse came back to collect me. She didn’t say much to me, beforehand she was really chatty. I didn’t think much of it, I just wanted to know the size of her after my son was born 10 pounds!
I got wheeled back into my room, smile from ear to ear, to look over at my partner and he just had a ‘look’ on his face sort of like a half smile but with lots of sadness to it.
It wasn’t a look I was expecting, again didn’t think much of it just thought he had been bonding with his daughter.
I looked over again to see he had been crying and the nurse had a concerned nervous face on! Tim came over and said “Trace, there’s something wrong with one of Ava’s eyes”
I immediately responded “Is she going to be blind in it?” He said “It looks as though she will be.”
Without seeing it, I thought they were overreacting. The nurse then showed me her eyes.
Her left one was perfectly normal, her right one not so normal. It was tiny, way under developed with what I could see a tiny iris!
A feeling of sickness came through me, thoughts raced through my head, what did I do wrong? Ava was perfect in every other way, so angelic.
My response after a short minute was (which I can’t believe how positive I was) “Oh no, don’t worry about that, they will just put a prosthetic in, at least it wasn’t an arm or leg missing and she isn’t dying. Give me a cuddle.”
My heart just melted away, this beautiful little girl just lay in my arms so peaceful not knowing what a fright she had given us. I don’t know how or why but I just knew everything would be ok with her. She just had this aura around her and to this day she still does. She is wonderful company.
The next morning an ophthalmologist came to see her. He didn’t deal with children but was asked to have a look as the children’s ophthalmologist was away.
He started looking into her good eye, I started to cry and said that’s not the eye you’re meant to be looking, at its her right eye.
He said, “I still will need to check this eye to make sure there was no damage in there.” My heart sank, as I started to think what happens if she is blind in both eyes? How will I cope?
After the examination he said “I think her good eye will be fine, and her other eye, well I have only seen one case of this and I don’t know what happened with him.”
That’s all the answers I got. Tim and I had prepared ourselves that she would be blind in her eye, which I think was the best thing. That way we wouldn’t get disappointed once she was finally diagnosed and also if we were told she could have sight that would have been a bonus! (we knew that would never have been the case).
We got discharged from the hospital after five days, all the nurses acted as if Ava was any other normal baby, so that’s the approach Tim and I took along with our family!
I still didn’t have a name for what Ava had, I didn’t know what she had, I was hoping it wasn’t cancer!
So then I began to search madly, we couldn’t get an appointment with PMH for 5 weeks. That is like an eternity to wait for a parent who doesn’t know what is wrong with their daughter’s eye.
Onto Google I typed “Baby born with small eye” and up came all these really long names such as Microphthalmia. After reading about it, Microphthalmia was what fitted Ava’s eye condition, I thought to myself, how am I going to remember all this medical jargon and learn to say “Micropthalmia.”
I also stumbled across a sight that a mother had dedicated to her son. He had Microphthalmia in his left eye.
I was ecstatic to come across this page, as there were so many pictures of this beautiful little boy with a prosthetic in and his eyes were the same size.
To tell you the truth I didn’t know how Ava’s eye was going to end up the same size as her other eye. I, at the time thought the eyes were like a marble shape and thought she would have to have the eye out.
I then began searching more about this condition and got in contact with mothers from all over the would. They were so helpful and reassuring and sent me many pictures of these kids with eyes in and best of all they still had there little eyes in.
Anyway after meeting with the doc at PMH I asked how soon we could get the eye in. He said “well, before she starts worrying about her looks.”
My heart sank again, why were they saying this when these other children had conformers in at 16 weeks of age?!?!
They then said we will see Ava again when she is 16 weeks. I thought great we can start putting an eye in and start the stretching process.
But nope, that wasn’t the case, even though they are fantastic doctors they didn’t think Ava needed a prosthesis till she was much older because she would not be worried about how she looked.
That’s when I got onto the phone to Paul and Jenny, and I must have sounded like this confused crazy mother trying to explain everything over the phone that day.
But Jenny was calm and said how about you come in and we can have a chat then, how does Monday sound? It was a Friday afternoon and I was ecstatic.
Finally we can get the ball rolling and didn’t have to wait forevvvvvver for an appointment.
Nerves passed me as I walked up the corridor to meet them, what would they be like? What are they going to do?
Warm friendly faces greeted us and we sat in their office chatting over a coffee in a very calm and relaxed atmosphere. It was wonderful finally someone who knows what we are going through and it was just good to spill out everything and Paul and Jenny just nodded and took everything in that I was saying.
I felt very happy when Paul was certain about how good Ava was going to look with a prosthesis. Jenny kindly wrote a letter to the doctors to get Ava in sooner, and after much stress and crying from me towards the doctor we got her in July 07 for her moulding.
That was such a sad thing to see my beautiful girl go. Why was this happening to her, why her? That was all I thought but I only knew the outcome was just going to be amazing!
And it was! She looks like a normal baby now, no more little wink, she is very lucky to be able to keep her little eye underneath the shell as the movement is fantastic!
I still remove the eye at night as we like to see Ava with her little eye in as this was the girl we saw for the first 8 months of her life, and she is just as beautiful without her eye in.
Ava getting around is no different to what my son was, she crawled at 6 months, took her first steps at 11.5 months. Now there is no stopping her at 13.5 months climbing, running, laughing, talking she is just every part the normal child that I knew she would be when I was in hospital that night with her.
She is everything I imagined her to be – inspiring – to show us that having vision in one eye is not going to limit her in any way (apart from depth perception which hasn’t affected her yet) and you can do anything that anyone else can do with two eyes.
In 15 years I hope Ava will be able to tell her story.
This year was very hard to begin with but things just got better and better. Thank you to Paul and Jenny for all your hard work, your coffees and just for everything you have done for our darling girl!
Tracey, Tim, Jai and Miss Ava!