Sunday, June 15, 2014

“ODDS ARE FOR PEOPLE THAT CAN’T DO IT” – C. BOSH



A LONG NIGHT’S JOURNEY INTO DAY

Temecula, CA – Those may be the ‘famous last words’ of the Miami Heat this 2014 NBA Finals on Father’s Day, but someone else surmounted seemingly impossible odds and made it to the finish line. This person didn’t accomplish the feat just for a ring, though a ring was involved. Also he didn’t do what he did for a championship, though it made him a champion in the eyes of others. No, this person did what he did because he is a father, and this is his Father’s Day story. 

The story actually begins before Basil Maqbool, chief druggist at Vail Ranch Phamacy, became a father, and just shortly after he was a husband. I had met Basil, my (then) day job boss’ friend before he got married and he seemed the nicest of my boss’ associates. I remember saying congratulations to him about his upcoming nuptials.

For awhile Basil seemed to have a perfect life. His business career was taking off, he had a new wife and a solid position in the community. When Beenish became pregnant, Basil had just recently purchased a new home in the valley. First son Raafay was born hale and hearty. Life was good for all in the valley for some time.

And then what seemed to be perfect in planning, a vacation with a side trip to a wedding of family friends, turned horribly wrong in a WTF way. Basil’s wife Beenish was ambushed by a shotgun wielding gunman whose hail of buckshot almost took her life. This happened outside their guest lodging in Pakistan. As the gunman later was either killed or committed suicide, a motive for the vicious attack was never determined. 

For close to a year, Basil put his business career on hold while he nursed his new wife back to health through various surgeries and healing procedures. Except for suffering the way any gunshot survivor suffers, Beenish healed as completely as possible though her chances for ever having kids again or even becoming pregnant could be life threatening, she was told. However, against all odds [see story title] she became pregnant again and went through a successful term. This is where Basil's blog post starts, condensed here Hollywood style.

“Nomaan was born on the first of October, 2007. He was a healthy 7.5 lbs. When he arrived in this world, Beenish and I were extremely happy and relieved. You see, because of the many health problems Beenish had, this was a high risk pregnancy. The nerve damage she sustained, the lead shrapnel left inside of her body, the bevy of medications, strokes, constant pain, etc, made this pregnancy very hard.  Honestly, we never thought she could get pregnant again (and) a few of her doctors told us to be prepared for that very possibility.

But she got pregnant, and Nomi was born. He was adorable. Our miracle baby. The baby we didn't think we could have. The doctors all checked him out. He looked healthy and happy.  
Just to be on the safe side, at just a few weeks old, the neonatologist asked us to go to Sharp Children's Hospital to have an MRI, just to make sure he would be OK.  We did, and everything looked good. Relieved, we went on with life, raising our child. Things were good.

More time went by, and it was Beenish who first noticed something was wrong. Nomaan never made eye contact. He would track her voice, but never make eye contact. If there was a bright light on somewhere in the room, he would automatically direct his attention that way.

We went back to Sharp, where a pediatric neurologist started seeing Nomi. As it turns out, this was the same neurologist who ordered and read his MRI a few weeks prior. After weeks of visits, the Neurologist could find nothing out of the ordinary... and referred us to a pediatric opthomologist at Sharp as well.

This doctor we saw barely spent any time with us. She just said it must be something neurological, and that we should return to the neurologist. Frustrated, we decided to get a second opinion.  By this time, Nomaan also developed a case of strabismus, or lazy eye. Did we just notice it? Was it always present? Was it getting worse, was this part of what was wrong? We simply didn't know. 

We went to a pediatric opthomologist at Scripps in La Jolla, who was supposed to do an ERG. He examined Nomi...  spent some time with him, and came up with an excellent theory. There was in fact, something wrong with Nomi's vision.

After some research online, and speaking to more doctors, we were told that Nomaan indeed needed an eye test called electroretinography, or ERG. Nomi's pediatrician recommended we see the pediatric opthomologist who worked right next door to her. We went to see Dr. Peter Spiegel a few days later. Instantly, we were impressed. Great demeanor. He took his time getting to know us, getting to know Nomi. He was patient and attentive.

He told us to start with just glasses and see how Nomi does. And low and behold, it worked. He was able to see much, much better. Here he was, at 3 months old, with these tiny little baby Harry Potter glasses. It was cute, we loved it.

By the time Nomi was almost 1, Dr. Spiegel decided that it was time to surgically repair his strabismus. The surgery went well, no complications.

Between the glasses and the surgery, we thought everything was going to be fine. We started to notice little things, like, he never wanted to look down. He would reach for a toy on the ground without looking at it, but feeling for it. Maybe it was because he was young, maybe because he didn't like his glasses, or his prescription was wrong? We didn't know. We also started to notice that his fascination with lights was getting stronger. When we would look at his beautiful light brown eyes, we would notice that they would shake oddly. He was 3 and a half now, and it was almost as if the glasses only helped him a little bit. He was still too young to communicate the problem specifically... but it was becoming more and more apparent.

Dr. Spiegel referred us to his former attending, Dr. Marc Borchert at the Children's hospital of Los Angeles, another specialist in pediatric opthomology. Based on all of his signs and symptoms, and the results of the ERG, in April of 2011, Dr. Borchert diagnosed Nomaan with LCA. It is a degenerative disease, and with time, leads to total blindness.  The retinal deterioration rate varies from person to person.

In Nomi's case, the LCA causes him to be extremely sensitive to light, both too low and too bright. In either situation he can barely see anything. The lighting has to be just perfect for him to be able to see anything at all. He has nystagmus (rapid shaking of the eyes). He has very poor peripheral vision. He has a hard time distinguishing certain colors. He has limited depth perception. And he is extremely far sighted.

At the time of Nomi's ERG in April of 2011, Dr. Borchert found that he had already lost 90% of his retinal function. 

His fear of doctors and the unknown outweighed whatever desire he had to have his eyes fixed, and at first he didn't want to go. He simply said "I don't need my eyes fixed". We still kept talking about it, and reinforced the positive.

Nomaan has now become used to doctors. He goes to his regular pediatrician, and he goes to his eye doctor on a regular basis. He still hates shots, and especially hates eye drops and taking medicine, even though he has had to do all of it many, many times over the years.

Once in Philadelphia, the doctors showed him some of the things they were looking at...scans and pictures. They were able to explain to him that his eyes were ‘sick’, and they wanted to make them better.


One of the scans they used, that shows the thickness of the retina, showed a natural dip in the retina... Nomi saw this dip and asked, "Oh, that's the part that's sick?"

He now speaks of Philly in a much different tone. He likes the maze doctor, Dr. Dan, a lot, and wants to play the maze game with him again. He also knows that he is going to go back quite a few times, and they will fix his eyes so that he can see better in the dark and he won't be as scared anymore. He is excited to play with his cousins who live there, Saaira and Aaliya again. He has always loved travel, especially airplanes, airports, and hotels... so that is a huge plus.

The Vail Ranch Pharmacist, the Calendar’s Father & Husband, 2014, with Family 


For the ‘book version’ go here for the well written first-person, heartfelt narrative. (Ed note: Certain facts have been corrected for accuracy.)

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