On June 25th, 2010 I received the news that I was pregnant. I couldn’t believe it, I was in shock. At the time I was only 17 and naive about the world. I never thought this would happen to me..I thought I would be spared from getting pregnant because that just wasn’t who I was.. I looked across the room to my mom who was biting her lip, holding back tears. tears of disappointment. I looked towards the doctor as he explained that a blood test would be done to determine how far into my pregnancy I was. I still refused to believe it. How could I of all people be pregnant? but these were my naive high school thoughts. Fast forward to January 2011, Tyler, Cody’s dad and my previous boyfriend, was still with me but was too scared to think of what was to happen in the near future. On the 13th, I went to school as I usually did with no problems or uncomfortable sensations. It was the last day of the semester before exams. All I had to do was get through exams and I would no longer have to deal with high school. I left school to take my license test- I failed. As soon as I got home I started to feel cramp-like sensations that only got worse as time progressed, by 2:30 the pain had spread to my back and I knew that it was time. My mom came home for lunch time and my dad was downstairs watching TV, I yelled for my mom who quickly ran up the stairs and called my OB/GYN they reassured me that I was in fact in labor and that they were going to call the hospital to expect me. I called Tyler’s mom and Tyler but he wouldn’t pick up so I started to panic that he might not make it to his son’s birth.. Right before leaving, he called and I told him I was in labor, 2 weeks before his due date. He told me he would meet me at the hospital and so I left the house en route to the hospital. My cramps that were actually contractions started coming closer together and more painful to the point where I could no longer walk. We rushed me up to the 3rd floor where they took me back and hooked me up on the baby monitor. Soon after- Bad news.. my baby was going through too much stress and I was only 1cm dilated.. they stopped my contractions and gave me oxygen to try to help the baby cope-no such luck. A C-section was to be taken place and immediately, I panicked! I didn’t want to have a c-section..that wasn’t part of the plan! They rushed me into the Operating Room as soon as Tyler walked in (almost too late) I was pinched and prodded, drugged and feeling absolutely nothing below my rib cage. Tyler came in soon after and then..It was time.
Cody Matthew G
Born January 13th, 2011 @6:14pm
weighing 4lbs 2 oz and measuring 18.8inches
via cesarean section.
On my way to the recovery room, they let me hold him, he smelled of new baby and was warm. I kissed his tiny tiny head and whispered a million times that I loved him. He was then rushed into the NICU where he stayed for 10 days for having 15,000/200,000 platelets (a dangerously low count) and hypoglycemia. He also had a hard time gaining weight. When I went home, I prayed to the lord he would be healthy and that he could grow and prosper like other kids. But God had different plans for Cody.
He nursed well and slept really well waking up once or twice a night, he was a very easy baby-or so everyone told us.
By 3 months, Cody was developing nicely and reaching every milestone! he was even holding his head up by 2 months. “How advanced!” we thought.
When Cody was 6 months, we took him to his well baby appointment and thought nothing of it. The pediatrician asked his round of questions before vaccines especially if he was reaching milestones. When we tried, Cody couldn’t sit up and as a new parent I didn’t know they were supposed to be sitting at 6 months so Dr. P asked us to keep trying to have him sit.
Fast forward 3 months to Cody’s 9 month well baby appointment, Cody still could not sit. Dr. P said he would refer us to an Early Child Intervention Program called “Infants and Toddlers” we contacted them and soon after we were interviewed to see how Cody was developing and in what areas he was lacking. Soon after, we got an appointment with a neurologist, I was angry because I knew Cody didn’t need to see a neurologist but I went through with it “just to be sure” On that cold October day, I found out more than I felt I wanted to. Cody’s muscle tone was too high and that was the reason he wouldn’t sit up, his hands continued to be balled up in fists- something that wasn’t typical for a 9 month old baby. The neurologist mentioned all these awful diagnosis: cerebral palsy, hemiparesis, stroke..They referred us to Children’s hospital for an MRI. As soon as we left, I burst into tears, my perfect son wasn’t so perfect after all.. I couldn’t believe it but I knew it had to be true because the pieces made a puzzle.
An MRI later, we went back to Dr. C for a follow up. She started to talk about Myelin and White matter, it all seemed very familiar and I couldn’t make out exactly where I’d heard it before. My mom asked about “Lorenzo’s Oil” and that’s when I knew.. My son was going to die young.
I fell into a depression and looked up countless websites for anything similar to Cody’s symptoms. I would wake up bawling every morning, my parents would hug me and reassure me that everything would be okay. We were referred to Dr. Vanderver: A neurologist specialized in white matter disorders.
We drove up to DC’s Children’s National and we were asked to get blood and urine samples for genetic testing that would be done on Cody.
metabolic illnesses, mitochondrial disorders, immune system problems, chromosomal abnormalities, loss of long chain fatty acids… All of them came back negative- I thanked the lord that we were crossing out all the disorders that resulted in early death
Cody was then diagnosed with Dystonia, an abnormal muscle tone disorder that typically accompanies other neurological disorders. He’s also diagnosed right away with Leukodystrophy-Hypomyelination meaning that he doesn’t have enough myelin for his age and that is what causes his motor skill delays. He’s prescribed medicine, and we move on with testing.
Infant’s and Toddlers finally speaks with us again and Cody’s given an evaluation. Cody is then 11 months old. His Motor Skills are at a 3 month level, his cognitive-motor skills are at a 5 month level, his social skills are at an 11 month old level, Fine motor skills are also at a 2-3 month old level. We are approved and given services. We start with Physical therapy, 5 months later we are added a Occupational Therapist, 3 months later a Speech Therapist.
A Spinal tap, more blood tests, another MRI later, we go back for a follow up in which the doctors tell us that Cody’s myelin count has INCREASED. Although not a significant amount, the news are wonderful and we are more than pleased. The Neurologist notes down all of Cody’s new accomplishments and milestones that he’s beginning to reach.
NOW- we are awaiting approval of the insurance company to do a whole genome testing on Cody, Tyler and myself. We await anxiously yet patiently and hope for new discoveries in the near future.
Cody continues to surprise us and enlighten us with his improving development, Every day he learns or does something new and for that we are EXTREMELY grateful.