I forgot to bring my lunch to work today so I went out to look for something to eat this afternoon. This brings me face to face with the building where I learned that Thomas was blind. Tom's retina specialist is in that building and I can't even look at it without remembering Tom's first year of life. We spent so much time in that building back then.
Tommy, back then.
I have told some parts of this story on the blog, but never quite this much about Tom's initial diagnosis. So many people comment on how positive this board is. Believe me. If I had been writing this blog back then my posts would have a completely different feel. Not quite dispair, but plenty of shock and confusion, with a healthy dose of fear.
Our first visit to that building was a retinal evaluation scheduled by our pediatric ophthalmologist after her in-office exam and ultrasound of Thomas' eyes. Tom was five-days-old on that first visit. Everyone else in the warm and crowded waiting room was a senior citizen, so our brand new baby really stood out. You could tell everyone was wondering why a baby would be seen in that office but everyone was too kind to ask - that time.
A lot of elderly people need to see retinal specialists for problems like macular degeneration and other retinal problems associated with age. It was always hard for me when the middle aged children of these elderly patients used us as an example, "Look at that baby. He has eye problems. You got to see your whole life so stop complaining!" Hey, thanks for using our tough situation as a teaching moment in the middle of the waiting room. Really. That was great, but back to the story of our first visit.
A very new Tommy. I loved dressing him in little boy style clothes instead of sleepers.
Add one unexpected element to this story: the G20 summit was in Pittsburgh at the time. The streets looked like a ghost town because of the expected protestors. While walking to our appointment we walked past patrols of police in riot gear who stared at us like we were crazy for being out and about with a tiny baby. It added a sense of unreality to an already tense situation.
We really had no idea that Tom was completely blind at that point. Shortly after Tom's birth, a NICU developmental specialist told us that he had no visual response. We were told it could be anything from a cateract to a type of tumor called a retinoblastoma, but a more through exam was needed to find out. We knew he could not see at that moment but we did not know that his eye condition could not be repaired. It seems like they can repair almost anything these days! We were so trusting and innocent.
Dr. Olsen is usually the retinal specialist you see in our area if your child has retinal problems. He displays a level of kindness and ease with small children that parents want to see from a doctor. At every visit, we waited to be called back to see a technician who used drops to dilate Tom's eyes and then we waited another hour or two for his eyes to dilate before the doctor could see him. A trip to see a retina doctor is always long because of the dilation and the obvious fact that these doctors are in demand. The waiting room was always packed!
When you evaluate the retinas of an infant or small child you must hold them down. The exam rooms are made for adults so you lay the child on their back along your knees as you sit in the ophthalmology chair. They use a small metal device to hold the eyelids open - a lid speculum - so they can get a good look.
After a quick look at Tom's eyes the doctor told us that Tom's eyes could not be "fixed" and that he would most likely be blind. He was very gentle. I have heard many people say that their doctor said, "Your child is blind. He/she will not play sports, or drive a car..." He did not say anything like that and I feel very lucky for that small mercy.
Dr. Olsen said that surgery was an option, but that Tom had a very severe, bilateral (both eyes) case of Persistent Hyperplastic Primary Vitreous (PHPV), also known as Persistent Fetal Vasculature Syndrome (PFVS), with retinal detachments. His left retina was completely detached, his right retina was partially detached, and both eyes were filled with scar tissue.
He told us that if Thomas were his son he would take him to see Dr. Capone or Dr. Trese in Detroit Michigan. There are many retinal specialists but few infant retinal specialists. With Tom's level of severity these were the people we needed to see. PHPV or PFVS is rare, but to have it bilaterally and as severely as Thomas does is very rare.
The red eye you see in his right eye is his attached retina. A beautiful sight made possible by medical science!
Dr. Olsen and our pediatrician wrote letters of medical necessity to our insurance company so that Thomas could be seen and possibly have surgery by one these physicians who were obviously out of our coverage network. We were approved and all of Tom's retinal surgeries were performed in Detroit by Dr. Capone.
All of Tom's post-operative care and subsuquent monitoring was done by our local retinal specialist, Dr. Olsen. That meant long, weekly visits to that building for retinal exams. Tom had five retinal surgeries before he was six months old. He wore a metal eye shield to protect his eye and needed 4 daily rounds of prescription eye drops in his eye for two weeks after each surgery. That means ripping off the medical tape that holds the eye shield in place so you can access the eye to insert the eyedrops. Medical tape has a whole new meaning to me now. It makes me think of Tom screaming every time I removed or replaced the tape for his eye shield.
Looking back, if we didn't have the joys and snuggles all new babies bring to balance out the constant medical drama, I don't know if I could have made it through those times. That was what kept us going.
Tom after his first eye surgery at two-weeks-old.
Today it's hard for me not to laugh in the face of a stranger who advises me to, "just wait and see what things are like when he's four, or when he's in kindergarden...." Lady, you have no idea who you are talking to. Have you ever handed your two-week-old baby over for surgery, have you devoted years to trying to feed a child who would rather let themself starve, have you fought for and participated in as many as seven weekly therapy session for your child? Come talk to me then.
We have not been back to that building in a long time. Now Tom's retinas are evaluated in the office of our pediatric ophthalmologist or during his evaluations under anesthesia (EUA), which take place a couple times a year.
I hate that building. I hate that it's just outside of my office building, always ready to remind me of what we went through.