Nichole McVicker

It was 2003 and I was fresh out of college. I decided to move to MD after graduating and found a job working at Enterprise Rent-A-Car. After three days of work, I met the man who would become my husband. Brian and I married in 2006 and had our first son in August of that year. Our son, James Joseph, was born asleep at 37 weeks. As we mourned the loss of our first son, we were elated (and very nervous) just a few months later, to find out that we were again pregnant with a little boy. Due to the complications of my first pregnancy, I was very closely monitored. Everything seemed to be fine until a routine sonogram. The doctor noticed that he had, what appeared to be, clubbed feet. I was not willing to take any risks during this pregnancy so I declined all invasive testing procedures that might have been able to alert us of any genetic conditions.

The day that Graydon entered the world was an exciting one for many reasons. I went to the doctor for a routine checkup. I was told that the amniotic fluid levels around Graydon were dangerously low and that I would need to be induced immediately. I was only 34 weeks, and because of the outcome of my first pregnancy, I was extremely scared. My labor was fairly uneventful (or so I thought). On August 31, 2007, Graydon Joseph was born weighing 5 pounds, 2 ounces. I only got to hold him for a minute before he was whisked off to the NICU. I was blissfully unaware that, while I was in labor, there was a fire in the NICU. Half of the NICU was shut down and all the babies were tripled up into rooms. I did not learn this until several hours after my delivery when my mother asked how I didn’t hear the announcements on the loud speaker and the sirens. Gee mom, I was a little busy. I was finally able to visit Graydon a few hours later. Brian had followed him to the NICU after his delivery. He wheeled me in to, what he deemed to be, The Cal Ripken Suite (room 8). Thankfully we would only spend 5 days there.

While in the NICU, Graydon had many tests. So many that I couldn’t keep track. And honestly, I didn’t really pay attention. He looked perfect to me and I was just happy to have him with me. When the genetic counselor called and asked us to come meet with her and the doctor, we knew that it couldn’t be good news. The day that Graydon was diagnosed with 18q- was the day that changed our lives forever. The doctor told us that his disability was very rare and it was going to be difficult for her to predict which symptoms might affect Graydon. She told us that affected individuals ranged from severely mentally disabled to being able to graduate from high school or even college. We were convinced we would be those college people. She sent us home and told us NOT to Google it. So I did. It wasn’t good. She also told us that The Chromosome 18 Registry & Research Society was an excellent resource for us. So we became members and started meeting other families.

At about 6 months old, Graydon began getting very sick. One day, I left work and headed to pick him up from day care. When I got there I noticed that he looked extremely pale and his breathing was shallow. I called the pediatrician and he told me to come right over to the office. As soon as he saw Graydon he whispered something to a nurse and she walked off in to a back room. He asked me to sit down in the chair. I did as I was told and he proceeded to tell me that he was calling an ambulance to come get us. Graydon’s breathing was so poor he didn’t trust that I could make the 10 minute drive to the hospital with him. So we took our first ambulance ride.

Graydon was diagnosed with aspiration pneumonia. We were admitted and he was given antibiotics. He seemed to perk up pretty quickly. Two days later we were sent home with an appointment for a swallow study at John Hopkins. As these appointment are very difficult to get, ours was for 3 months later. Graydon got sick again. And again. And again. After several trips to the ER for aspiration pneumonia, Graydon’s pediatrician again called the ambulance for us. This time he insisted that we be taken to Hopkins. I am 100% sure that his call for that ambulance saved Graydon’s life. We were taken by ambulance to Hopkins and admitted. The pediatrician later told me that he did this so that they would have to bump up his appointment. That they saved a certain number of appointments for inpatients. Graydon was given a swallow study later that day. The doctor came out to me and told me that Graydon would need a G-tube. I remember getting a huge smile and she said to me “you know that’s not a good thing?” I said “it will make him better right?” She said “yes.” I replied “then it’s a good thing.” One week later, at 11 months of age, he had the surgery to place the G-tube.

The 12 week recovery was tough but within 2 weeks Graydon had gone from 13 pounds to 16 pounds. His demeanor completely changed. He was happy! And so was I. Brian and I decided that with all of Graydon’s medical issues I could no longer continue to work. So I happily became a stay at home mom. Unfortunately this relief was short lived. About two months after surgery, Graydon had his first seizure.

It was 11:00pm and we had just gone to sleep. I heard a soft noise but thought nothing of it. Thankfully Brian did get up. The next few hours were the scariest of my life. I would take my third and fourth ambulance ride that night. The first to a local hospital and the second to be transferred to Hopkins after he stabilized. We only spent one night and the doctors really couldn’t tell us why it happened or if it would happen again. So we went home, very scared. We made it through a few days before seizure number two came. I was in denial that they might keep happening, and Graydon seemed fine, so I kept my plans to head home to NJ with Graydon for the weekend. I made it about 20 minutes down the road when I looked back in the mirror and saw Graydon’s little lips were as blue as the night sky. I immediately pulled over and pulled him from his car seat, doing everything I could to snap him out of it. He did come out of it but now we had the scary side effect of him not breathing during seizures. After that I was afraid to leave the house. Every other day for the next month and a half, Graydon had a seizure. Every time, he stopped breathing. The day he had a seizure on a crowded hayride in the middle of a pumpkin patch was a particularly interesting one. After about 2 months, they stopped just as mysteriously as they started. His last seizure was on Halloween Day of 2008.

I feel very blessed to be able to say that we have had no major medical emergencies since that day. Graydon remained on seizure medication for 3 years following his last seizure, just in case. Brian and I were feeling pretty good about Graydon’s medical stability, so in 2009, we decided to try for just one more child. In June of 2010, Josephine Benedetti was born. What a joy it was to have our third child, and finally not have to deal with any medical issues.

In 2013 we left our townhouse to build a home that better suited Graydon’s needs, especially his wheelchair. Graydon and Josie get along well and they love each other so much. Josie even asked for a wheelchair for her doll for Christmas this year because “she can’t walk, like Graydon.” It’s a great joy to watch them grow up together. He also has 2 older siblings, Jacob and Meghan, that love him very much and are very protective of him.  Graydon is now in 3rd grade and enjoys going to school.  He’s very social and his teachers love him. He still has his challenges but he is the happiest child I know.  And that’s what matters to me.

The Chromosome 18 Registry & Research Society has been an integral part of our lives for since 2008. The relationships that we have formed through the Registry are like none other. We are family and we comfort and support each other like no one else can.