Hanna's Story

Thanks for stopping by! And thanks for being interested in Hanna's story. I'll start from the very beginning, and try not to leave anything out. 

Hanna was born on October 22nd, 2008. She was 6lbs, 11 oz and was nothing short of another perfect little girl. She was a wonderful addition to our family of now, four. 
Everything was perfect!

Soon we noticed that Hanna's thumbs appeared crooked. She seemed to hold them in her fists a lot. We asked the nurse what she thought about it, and she laughed and said "Oh, yeah! Hm...I'm sure they're positional, it's probably because she had them clenched in her fists for the past few weeks before she was born. They'll straighten out with time."
So, we let it go.
After two days we got to go home, and show her off to everyone. Gracie was so proud to be a big sister. She couldn't be close enough to her new baby. She stayed by her side always, and didn't stop kissing her.

I had noticed in the hospital that Hanna had involuntary movement of her eyes. We didn't think too much of it because it's a known fact that sometimes infants don't have complete control of their eye muscles until they're about three months old, so we gave her some time.

I became paranoid about her eyes. I felt that something just wasn't right. She didn't look at me when she nursed, and she didn't seem to notice toys or anything. I began my research. 

She was 10 weeks old when I found a website that had a little girl who's mother found her eye cancer by looking at a photograph of her. Her eye didn't have a red reflex like the other one did, and it appeared to have a white pupil. 
I don't know why that article struck me like it did, but I got up from that computer and took out every picture of Hanna I could find. In almost every picture of her, there was only one red reflex, and one white pupil. My heart sank. I immediately started thinking the worst. I wasn't waiting any longer.

The next day I made an appointment with an optometrist. We were in his office two very long days later, and he saw a "mass" in one of her eyes. He had us go directly to an ophthalmologist to have her examined immediately.
This next doctor was so cold-hearted, and had no bed side manner whatsoever. She made me hold down my screaming 10 week old while she poked and prodded at her. Matt stayed in the hallway with Gracie because she couldn't stand to hear her baby sister screaming so hard.

This is what that doctor threw at us:
Hanna had a "mass" in each of her eyes, which may be cancer, and probably some sort of syndrome because she doesn't look like her sister.

Um...Excuse me? She doesn't look like her sister, so she has a syndrome?
We left that office and didn't say a single word to that woman.
We didn't say a single word to each other.
We were devastated.
We were angry.
We didn't know what to think.
The same doctor wanted to examine Hanna again the next day, but this time in the NICU so she could sedate her.
I didn't want any part of that. I didn't want her touching my baby again.
Deep down I knew it was the right thing to do, and I knew it would get Hanna a referral to one of the best Children s Hospitals, and we wanted only the best for our little girl.

The next day, in NICU, Hanna had her little eyes examined again. They ruled out cancer.
Thank God!
They said she probably has PHPV, which is commonly found in different syndromes, but they wanted another opinion.

Hanna was referred to SickKids Hospital in Toronto, and we saw another ophthalmologist. She had an ultrasound-type exam done on her eyes and she also told us that Hanna had PHPV.
She also noted that Hanna was microcephalic, a fancy term for "small head".
She referred us to Genetics to make sure there wasn't any more systematic abnormalities. She also wanted, yet another opinion. We didn't mind all the referrals at this point. The more people that looked at her, the better!

Next we saw a retina surgeon. We were hopeful that he would be able to do something for her.
He looked in her eyes, and almost instantly ruled out what the other doctors were so sure she had! He told us that Hanna probably has a genetic eye condition called FEVR (Familial Exutative Vitreo-Retinopathy).
It is a progressive eye disease, which can lead to total blindness. He told us there was nothing that could be done, surgery wise, but he also said that you never know what the eyes are capable of.
We really liked him.
He also told us that he wasn't concerned for Hanna's health. She was small, but FEVR isn't usually associated with other abnormalities. He referred us to Ocular Genetics, and we left there feeling really good.
We were so relieved that it was only her eyes!

A couple months went by, and then we got the call from Clinical Genetics. We met with them and they examined Hanna, looking for any abnormalities at all.
They noted her crooked thumbs I mentioned earlier, and that she was much too small for her age. She was diagnosed with failure to thrive and microcephaly.
They also heard a heart murmur. They referred her to MRI, for a brain scan, cardiology for her murmur, and X-Rays of her hand for bone age, and to look at her thumbs.

What we thought was only an eye condition, most definitely wasn't anymore. We were now worried about her brain, her size, and her heart!
Her eyes became the least of our worries.
We went back and fourth to Toronto to have Hanna's blood drawn, and urine tested for metabolic disorders. They found that some of her amino acids were really elevated, so we had to do many repeat tests. Her kidney and liver tests kept coming back normal, so they were, and still are, puzzled with her amino acids. They think it's all just part of her genetic make-up.

Her X-Ray came back with a bone-age much younger than her actual age. I'm not too sure what that means, but they're not overly concerned.
The scan also showed that her thumbs have an extra digit. This was a red flag telling them that it was probably a genetic reason behind all of it.

The preliminary results of her MRI were normal. Structure was normal, just very small. Later they told us that after a few other professionals reviewed the scan, they noted that the little grooves in her brain were "simplified", but not enough to say how it will effect her development. The only thing that the MRI showed was that she was born with a small head, and it probably wasn't a metabolic disorder causing her small size. This was good news. Now they could look in a new direction.

Her heart ECHO showed that she has three holes in her heart. We're blessed with a very optimistic cardiologist who is quite confident that those holes should close up on their own in time. He is keeping an eye on one hole, in particular because it's in the wall between the two chambers. It's very, very small, but it is possible it could cause problems. So I'm sure she'll be seeing him annually until it closes up completely.

So there you have it. Our mystery baby!
No real answers...
All we know is that Hanna is healthy, happy, and active! 
We're not sure what she can see, but it's definitely something. And that's more than we thought she'd have. 
She loves to sing and dance, and gives the best kisses.
She's got the most contagious smile and the best laugh. 
She loves any music, and loves listening to her daddy play the guitar.
She's changed my world.
For the better.
She's definitely one of a kind. She's so special in so many ways, and I feel so blessed that I was chosen to take care of her.
Hanna has brought so much joy to our lives, and I wouldn't want her any other way!

We'd love it if you joined us in our special little girl's journey.
Hope to see you back!

*Update 2014*
Hanna is now a talkative, very funny 5 year old. We learned that she most definitely has some residual vision that she uses very well, and will be learning both print and braille. 
She is still very small at just 29 lbs, but she is mighty. 
The holes in her heart have closed up aside from one, and her cardiologist now sees her only once every two years. 
She's smart as a whip, and has one amazing memory.
She's doing fantastic, and she's well on her way to doing great things! 
This kid will move mountains. 

*Update February 2016*
Hanna is doing wonders! She is now in grade 1/2 at home with me. She's learning at a nice pace - braille and print. She reads simple sentences and recognizes many braille letters. She has two pen-pals that she enjoys writing to on her brailler (with significant help from me) and she will more than likely use braille as her main source of literacy as she starts to read and write more, as her eyes fatigue very quickly.
She's still very small, weighing approximately 35 lbs. but she is growing steady. Her small stature and tiny build doesn't stop her from being just as active and rambunctious as her siblings. Her favourite things to do are ride her bike buddy (basically a tandem bike) and swing as high as she can get on the playground. 

She's an amazing little thing, and cracks us up daily with new intelligent words and surprising phrases that she comes up with, just to make sure we all know how smart she is!