Thursday, December 11, 2014

My Newborn Is Getting the Surgery That My Parents Said Couldn't Be Done

In all of my box-related press, somehow my blindness never came up. I have congenital cataracts that were never removed when I was a child. Aside from my eye movement, there are no physical signs that i have a visual impairment. Living with this disability has posed its own set of challenges, but I know no other life, and I don't usually think about it. I know no other life, and sitting around obsessing over it wouldn't get me anywhere. For my entire life, my parents have insisted that this cataract was rare. They said only 1,000 people in the world had it. They said the shape made it inoperable, and that the cataract would just grow back if they removed it. They said most eye doctors are just too uneducated and inexperienced to have seen it before. They made me believe that I was somehow the sufferer of an extremely rare, extremely unfortunate condition.

Yeah, no. All of that? A complete load of bullshit.

My daughter, Annikki, was born on October 29. I had a feeling she may with my cataracts, but we didn't find out for sure until the 27th of November. The doctor here in Pori said they needed to operate on her "right away". Naturally, I panicked. I told him everything my parents had ever told me, but it seemed as though he ignored every word. He said we'd need to take the baby to Turku for an examination that would involve anesthesia, followed by an operation. I panicked, again. Why would I want my (then) 1-month old to be put under general anesthetic in preparation for a surgery that would only hurt her?

My mother was in town at the time, and when we came home and told her the news, she reacted just as I thought she was. She kept insisting that it was inoperable. She said the Finnish doctors probably just hadn't seen it. She did everything she could to try and convince us that surgery would only hurt Annikki, and we believed her. When my brother and I were born, we were seen by specialists, and all, according to my parents, said that surgery wouldn't help us.

The hospital in Turku called us the next day, and started putting pressure on us to go down for emergency surgery. We adimently said no, and kept trying to explain what my parents told me. In the mean time, I'd asked my mom and dad to look for my old eye reports so that I would have some evidence to back up what I was saying to the doctors. The doctors in Turku kept repeating that if Annikki had her lenses replaced before she was three months old, there was an extremely high chance she'd have normal vision, and be able to do things that I'll never be able to do. We didn't know what to believe.

A few days later, we received a phone call from our original doctor, saying that if we didn't take Annikki to the hospital in Turku, he'd get Social Services involved, and attempt to get temporary custody of Annikki so he could have the surgery done. So, like any sane, loving, and terrified parents would, we agreed to go to Turku.

While all this was happening, my parents weren't able to come up with any of my, or my brother's, old eye reports. None. At least, nothing that said anything that they said, and nothing from when I was an infant.

Annikki did super well in Turku, and the doctors and nurses treated us with respect, and did what they could to explain the surgery process to us. We had no choice but to agree to it. They had threatened to take our awesome little bear away, and my parents weren't able to provide me with any factual evidence of why Annikki would have a greater risk during surgery than any other child born with congenital cataracts.

When we got home, I called both parents and explained our desicision, and what the doctors had said. Both were furious with me, and still insisted that none of the Finnish doctors knew what they were talking about. It finally occurred to me to ask one very simple question:

"How old were my brother and I when we were first examined, exactly?"

And, that's when i got my answer. I was about a year old, and my brother was even older.

So, of course OUR cataracts were inoperable - we were too old. Our eyes had already developed to accomodate the cataract, and no surgery could rally do anything, other than maybe fix our eye movement. It had nothing to do with where our cataracts came from, only our age.

Explaining this to my parents, and also adding that technology probably wasn't all that great 24 and 34 years ago anyway, was pointless. At the current time, the general consensus in my family is that I'm ignorant, the doctors are uneducated, and Annikki is going to have a botched eye surgery and end up helpless. My newborn is about to have surgery, and my family would rather keep her blind than admit that technology has improved and that our family isn't "special".

My boyfriend is embarrassed for believing my parents over cataract specialists, but I'm mortified and hurt. For my entire life, I've been telling people that I had this rare condition. In reality, I do have a rare condition - hereditary cataracts aren't all that common - but that rarity doesn't make it "special", and it certainly doesn't make it inoperable.

I was just taken to the eye doctor too late, and had parents that feared medical practices they didn't understand. Nothing more, nothing less. 

I just hope Annikki can do better than I ever got to do. And I'm thankful it's not too late.

Annikki's surgery will happen before mid-January. The surgery itself won't cost that much, but the travel costs, and costs of medicines and check-ups will hit our family hard. please consider donating to help us: my

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