This blog is about my son, Thomas Marshall. He is an amazing toddler and I think his story needs to be shared.
My husband and I were elated when our son, Thomas, was born. He is our first and only child. But while we were still in the hospital we knew something was different by the way the staff was treating us. And before long we had a bunch of doctors in our room all trying to examine Tom. At birth the doctors noted that Tom has Microcephaly (a smaller than normal head size.) Microcephaly can just mean your head will be smaller than everyone else in your class or it can be associated with mental retardation and other health concerns. At this point I can tell you that I do not think Thomas has any signs of mental retardation and neither do any of his therapists. And he has five therapists and has seen a troupe of specialists.
When our pediatrician visited us in the hospital she noted that Thomas did not have a red light reflex when she shined a light into his eye. You know the red eye that shows up in pictures? That is a reflection of the vascularization in the back of your eye. If you don't have that it spells trouble.
A developmental specialist from the NICU examined him and told us he had no visual response. We were quite simply crushed. However, during her exam she said, "Mom, Please call out to Thomas." So I did and he practically lunged as he turned to the sound of my voice. This was an indication that our Thomas was in there and he knew what was going on. After the parade of smiling, nervous doctors had thoroughly exhausted us, Thomas himself gave us hope in that small gesture.
We stood outside of my hospital room and listened to Thomas scream while his eyes were examined by pediatric Ophthalmologic fellows. That is the most helpless feeling. As a new parent, it was just anguish to hear the baby I had waited so long for scream like that, and be powerless to help him. After this heartrending eye examination was over, we were given an appointment at the Eye Center at the Children's Hospital of Pittsburgh. We didn't even get to go home from the hospital with our new baby. It was straight to another hospital.
At the eye center, Tom had an examination and an ultrasound of his eyes. His pediatric Ophthalmologist informed us that she believed that Thomas had detached retinas and told us we needed to see a retinal surgeon ASAP.
So when Thomas was five days old we took him to a retinal surgeon in Pittsburgh. We were told that Thomas has bilateral (both eyes) detached retinas and would most likely be blind. This doctor gave us the best possible gift when he told us we should go to see Dr. Capone, an expert in the field of infant retinal surgery. We waited on pins and needles for him to say where this surgeon was located. When he said Royal Oak Michigan I was flooded with hope and relief. This was possible! My best friend lives just outside of Detroit and Royal Oak is also a suburb. Coincidences like this don't just happen.
We were very lucky that my friend and her fiance opened their home to us. Can you imagine that call? Can I come stay with you and your fiance and, oh yeah, I'm bringing my my husband and my two-week-old infant?
We stayed with them six times during Thomas' first eight months. Through five vitrectomy surgeries to reattach the retinas and once where they did not end up doing a surgery. We have been extraordinarily blessed because Tom has almost full retinal attachment in his right eye and a small attachment in his left eye. By the spring of 2010, we could see the red light reflex in his eye in pictures. It was so exciting!
Thomas, Summer of 2009
Now Thomas' eyes never formed normally so he will never see like the average person. But it is astonishing to come from no visual response to having some sight. Every time Thomas can reach out and grasp an object by sight it is a miracle. And I mean MIRACLE. Every time he tries to follow an object it is a complete victory because he is using the vision he has.
My job is to get Thomas what he needs to be the amazing man I know he is. I created this blog to share that journey with you.