Thursday, January 29, 2009

Our Journey Continues

The space at the back of the eye, behind the lens, is normally filled with a clear jelly. This jelly is called the vitreous. Children with PHPV are born with a hazy, scarred vitreous. The hazy vitreous blocks light passing to the back of the eye. This leads to blurred vision.

Hanna was referred to SickKids Hospital in Toronto to see a pediatric ophthalmologist. This specialist also thought she had this PHPV, but wanted a second opinion. So, she was referred once again to another eye specialist, this time a retina surgeon. Dr. Kertes is now Hanna's eye doctor. He ruled out PHPV almost instantly and is confident that the condition she has is FEVR. Familial exutative vitreo-retinopathy. He says it's a very rare genetic condition, that can get worse over time. Babies who are born with a severe form of the disease are born with retina folds and retina detachments, and can't get much worse than that. Hanna has both, and Dr. Kertes thinks surgery will do more harm than good right now, so we're leaving it alone. Her left eye doesn't seem to have much of an optic nerve at all. (Which is the part of the eye that processes pictures). So we're focusing now on her right eye and what she may possibly be able to see, if anything.

Overall it was a good trip to Toronto. They ruled out PHPV, which could be associated with other syndromes, and now we have some answers. Hanna has FEVR. Only an eye condition. We can handle this. We can learn braille. We can teach her how to use any little bit of vision she has. We are thankful it is just her eyes.

Friday, January 23, 2009

Our Little Hanna

Hanna Marie was born 6lbs 11 oz. She was 18 3/4 inches long, and appeared to be a healthy little girl. We took her home and let her big sister get to know her as soon as possible. I noticed almost right away that she had involuntary movement of her eyes. It was like she couldn't focus on anything. She never seemed to look at me while I nursed, or even when playing with her. She actually really liked to just sleep. I know I know, most babies sleep a lot. But Hanna just didn't seem very interested in anything going on around her. That's when I became concerned about her vision. Everyone kept telling me "she's small, she just might need to get control of her muscles still". But my instincts told me otherwise.

I waited anyhow. And as I waited, I researched. I saw a website that had a woman who found her daughter's eye cancer through a photograph. The red reflex only appeared in one of her daughters eyes in many photos, and the other pupil appeared white. Only in photos. So, of course, being the paranoid mother I am, I started looking at photos of my girls. And guess what I found. Almost every picture of Hanna, one of her pupils appeared white while the other red. It game me chills. My mind was racing. Oh my God. Hanna could have cancer! She could lose her eye! Or worse! It could spread!

That was all the waiting I could do. The next day, she was now 10 weeks old, we brought her in to see Dr. Chan, a wonderful optometrist. I was praying that it was my camera causing the weird white in her eye. But he saw it almost instantly. He told us that there was a "mass" in her left eye, and he wanted it looked at right away. So 25 minutes later we were at the ophthalmologist's office. I have forgotten this woman's name on purpose. She had no compassion whatsoever. She made me hold down my little angel's body while she screamed her little lungs sore, so that she could prod and poke her eyes. Matt was in the hallway with Gracie because Gracie couldn't stand to hear her baby sister screaming.

Finally, after what seemed to be forever, she let me hold and calm my little Hanna. She told us there was a "mass" in each of her eyes, and she probably has a syndrome because she doesn't look like her sister. Referred us to the hospital so she could sedate Hanna in the NICU and get a better look, and out the door she went. We walked back to the car and didn't say a word to eachother. We were devastated...and mad! That doctor could have comforted us a little bit, or at least given us the news lightly! Common, she doesn't look like her sister so she has a syndrome? What?!
We went home and broke the news to our families. As far as we knew, Hanna had a possibility of having retinoblastoma, a potentially fatal eye cancer, or some sort of syndrome. Everyone was more than supportive, and came with us to the hospital the next day.

The same nasty doctor from the day before sedated my baby and looked her over once more. Thank God. No cancer. My prayers were answered. The worst case scenario wasn't happening. The "mass" they saw was the normal fluid in her eye but it wasn't clear. It was foggy because it didn't clear up as it should have before she was born. So now the new possible diagnosis is PHPV.