Meet Hannah

By Jenn of My Little Rays of Sunshine.

Hi! I m Jenn. Thanks for reading our story!

I guess I'll start from the very beginning.
Four years ago I married my high-school sweetheart, Matt. He proposed in November, and we were married in February. We had a total of seventeen people present at our wedding. (Just our immediate family), and that s how we wanted it. Something fast. Something simple. We just wanted it done.

We knew we wanted children, so just a few months later we were expecting our first. Nine months after that Gracie Lynn entered our world. She was a joy. She was perfect. So much fun! We loved every little bit of having a baby around, so we figured we d have more. She needs a playmate!
How about we time it so they ll all be about eighteen months apart? Maybe we could have four, or five?
Our plans had begun!

Almost exactly eighteen months later, I delivered a very healthy, 6lb, 11oz Hanna Marie. Another perfect little girl.

My mom noticed when visiting us at the hospital 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.
We got to go home, and show her off to everyone, and we were completely thrilled. 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 movements of her eyes. We were told that infants don t have complete control of their eye muscles until they re three months old, so we should just give her some time.
She didn't look at me when she nursed, and she didn't seem to notice toys or anything. It really bothered me. But we waited.
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.
Being the paranoid mother I am, I started looking at pictures of Hanna. 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 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.
She then threw this 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.
What?! 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.
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 another eye exam. 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, which at the time, we had no clue what that was.
She referred us to Genetics to make sure there wasn't any more systematic abnormalities. She also wanted, yet another opinion. I figured the more people that looked at her, the better!
Next we saw a retina surgeon, and hoped 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 Genetics. We met with them and they examined Hanna looking for any abnormalities.
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.
Now we were worried about her brain, her size, and her heart!
Her eyes became the least of our worries.

From then on, Hanna has had countless blood tests looking for possible metabolic problems, and chromosome testing looking for anything at all.
They can t find anything.

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. Like a finger.
So what!
She ll be a piano player!

Her MRI came back normal. Her brain structure is normal, but very small.

Her heart ECHO showed that she has three holes in her heart. Once again, they re not concerned. They should close up on their own in time.
They are keeping an eye on one 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.
She hasn't any symptoms yet, so her cardiologist is very optimistic.



At 16 months old, Hanna is not quite 15 pounds, and she is 28 inches long. She's very tiny, but that's about all they know.
We have been so grateful that all this testing came back so well. The doctors, on the other hand, are getting frustrated!
Anything they start to think she might have doesn't quite match up with her because she's hitting milestones.
It s like they want her to be delayed.
They want answers.
She's got them all puzzled.
I'm so proud of her! :)

CNIB (Canadian National Institute for the Blind) comes to the house once a month, and they completely thrilled with how great Hanna s doing.
She's not quite walking yet, but we were told that she is actually ahead of most blind children her age.
She doesn't have balance issues, she s just not confident enough to walk and explore on her own.
I think she's going to stick with crawling for a while.

She loves to dance, and sing, and babies, real or not.
She gives the best kisses, and hugs, and has the most contagious smile, and the best laugh ever!



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 be her mama.
Hanna has brought so much joy to our lives, and I wouldn't want our little mystery baby any other way!



To all the parents of special babies:

"Only special people get special babies."

I don t know about you, but that makes me feel pretty darn good. :)