Saturday, August 13, 2011

Cal's Little Right Eye

I’ve been thinking back to two years ago when we found out that Cal had PHPV (Persistent Hyperplastic Primary Vitreous) in his right eye. Within a couple weeks' time the pediatrician said he thought it was PHPV, the ophthalmologist said Cal had probably never been able to see in that eye, and the retina specialist said that his retina was detached and that he would never see and quite possibly not only be blind in that eye, but that it would probably die and have to be extracted. It was the worst news I’ve had in my life. Even compared to my big car accident and finding out all the bones that I had broken and being in all that pain, it wasn’t as bad as this. Knowing that your son will go through life with only one eye and with the cosmetic repercussions it will doubtlessly play in his social and psychological development was a lot to digest and I’ve never felt so hopeless.
After his LONG initial surgery
Brian and I would have gladly given anything to be able to lose an eye instead of him, with his whole life ahead of him. I hated thinking that my world, the world I see, would never be exactly the world that he would see. 

But Calvin has not only his surgeon, but his father, my persistent and determined husband, to thank for his vision. Brian never gave up. When I thought we should just be resigning ourselves to his diagnosis and preparing for all it would mean to be his parents, Brian stayed up all night researching the mysterious and rare condition called PHPV and its support groups and specialists. He sent all Cal’s records up to a highly recommended doctor in Long Island, New York. The doctor called us back late on a Thursday night to tell us he saw an inconsistency between the dictation on a chart and the diagnosis. We hung on to hope and made the five hour trip up there with our two infants. 
On the way home from Long Island...eye drops in the van

As the doctor performed the sonogram Brian and I exchanged looks as he kept going over and over to look and look again at what he saw on the monitor. What he said made my heart skip a beat and pound mercilessly at the same time. Cal’s retina was not detached. Cal would see! This doctor saw the mistake the retina specialist had made and knew how to fix the eye. I stared at Cal's little face in the parking lot afterward and cried. My little boy would see and it was the happiest news I could ever imagine receiving. There was a long road ahead of us full of surgeries, eye drops, eye patching, high risks of glaucoma, contact lenses, and glasses, but we were so thankful to even have the chance to tackle them. After the nearly four-hour surgery two years ago tomorrow, we couldn’t have prayed or hoped for a better outcome. In the first surgery he had his natural lens taken out because it was mostly a mass of scar tissue. The doctor painstakingly removed all the other scar tissue he could that was binding up and essentially killing the eye. 
After his second surgery-- a minor one

Cal has had a surgery since the initial one and several exams under anesthesia. He had to remain mostly head down and on his right side for three weeks after the first surgery to allow a minor tear in the retina to heal. For a period of time we were giving him around 20 eye drops a day. We learned to put a contact lens in an infant and take it out again. We learned to patch him all waking hours except one to allow the weak eye to grow. Purposefully taking away the vision in his good eye in order to strengthen the other eye broke my heart, but we were encouraged by the fact that he could clearly see something with his weak eye. Patching hours have decreased and we now patch him from 3-4 hours per day. He is amazing about it. He doesn’t like having it put on, and always asks for a hug and kiss before we do it, but he keeps it on and takes it off by himself when we tell him he can. He loves to “smash it up and throw it in the garbage!” when his time is done. 
Happy Cal at the park last summer

We have finally found a contact lens size that fits him after losing many, many expensive lenses. We only have to put it in and take it out once a week. He still fights getting it put in but he always requests that Clark sing Head and Shoulders, Knees and Toes, as we put it in and of course wants many hugs and kisses throughout. I don’t know if he’d be so affectionate (he’s the best hugger I know) if it weren’t for his eye problems. We have frequent checkups with him and will average two exams under anesthesia per year until the threat of glaucoma is significantly less. He functions well while he’s patched. We think he can see decently up to about 12 feet away. After that he has a hard time tracking anything. 
Best friends-- the boys last fall

The doctor recently told us that he probably can’t see in both eyes at the same time because his one eye is so much more dominant. She didn’t suggest any rigorous way to try to combat that though, and since we know that a child’s eye is developing until he is 6 years old or so, we’re getting a second opinion with another doctor next month. This has been such a journey for us and for Cal. After the doctor did the initial surgery he told us that the eye was even in worse shape than he thought and that it probably would have died and had to be taken out in a few months. That would have resulted in all kinds of problems with the growth of his head as well as the cosmetic issues that come from a child with a glass eye.

Cal with a windchime this spring
We are so thankful for all the prayers and support we got from family and friends on Cal’s behalf while we were going through the worst of this. Calvin’s little right eye is a miracle and I try to thank God for his vision every day. I can’t believe it’s been two years, but I’m so glad it has and that we’ve had no real problems since then.  

Next step-- getting used to protective eye glasses


  1. Dawn,
    I got very emotional reading this. I understand what it is like for your child to have surgery as an infant, as you know Nick had surgery at 3 weeks and would have starved to death without it. It is something that I don't think about daily anymore, but it certainly remains with me as a mom. Life is fragile and precious. I look at him everyday and thank God too.

    I adore your boys, Cal is so sweet. I picture him climbing into my lap after we'd been in Scotland, and just yesterday at the fountain, when I was lifting Cal up over my head again and again, and when I put him back down on my lap he leaned in, put his forehead against mine in a sort of 2 yr old gesture of love and thanks. That is Cal.

    You and Brian are strong and wonderful, as is he.

  2. Thank you for the kind comments, Aimee. Sending infants into the operating room certainly is scary. I hate that we've had to do it, but I feel so blessed that we've only had to do it a few times. My heart goes out to those parents who have to do it more often than that even.

    I hope you know how much the boys love you, too. I think they might like you more than they like Nick, but don't tell him that. I think you're pretty okay too. :)


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