The story of Colleen
During my second ultrasound, I was told that I was having a baby girl. As she grew and I watched my body change, I often daydreamed about who she’d look like and looked forward to the milestones and memories we would create together as a family. After being two weeks overdue, my doctor decided it was time for my baby girl to make her entrance into the world. With a little help I went into labor and gave birth to my sweet Cameron on February 12, 2001.
She cried. She was alert. She was beautiful and perfect. The doctors even gave her an Apgar score of 8 at 1 minute and 9 at 5 minutes. As time went on, I sensed something was changing in Cameron. Although everybody, including the medical staff told me everything was fine, my feelings toward her weakness became stronger as I watched her decline. Around the clock for 24 hours, nurses checked on Cameron to monitor her feedings and vitals and the pediatrician stopped in to evaluate the typical newborn checklist, all of which Cameron appeared to them as a thriving new baby, just a little sleepy. They advised me that many newborns are exhausted after birth and there was nothing to worry about. Cameron meanwhile, did not cry, was not eating, and slept the entire 36 hours we spent in the hospital. The next day, as I was preparing to take Cameron home, something inside of me still believed there was something wrong. Cameron was so lethargic and couldn’t open her eyes. The one request I demanded before leaving the hospital was to have someone come in to help Cameron breastfeed. This was my biggest worry at the time. Having the lactation nurse come in and complete an evaluation saved my baby’s life. Within 5 minutes, Cameron was rushed to the neonatal intensive care unit for more evaluations and she was placed on life support.
Cameron was transferred to Kaiser Los Angeles to be seen by specialists. There, we learned Cameron was missing a part of her brain, called the Corpus Colosseum. It was also confirmed that she had a small bleed in her brain and was displaying seizures activity. Finally after many tests, we were informed that she had a metabolic disorder, Non-Ketotic Hyperglycinemia. The doctors explained to us that Cameron’s life would not be easy and we had the option to give her up. They also said that she would be a vegetable, not live to her first birthday, and that our lives would be HELL raising a baby with so many problems. Giving our baby up was not an option for our family.
When Cameron finally came home from the hospital, our house was transformed into a mini medical center, where nurses, social workers, therapists, and medical personnel began to teach us how to care for our terminally ill child. Cameron had a nurse who administered her medicine, fed her through a feeding tube, and constantly changed her positions throughout the day so she wouldn’t develop bed sores. Therapists came out to the house to build Cameron’s strength and relax her muscles that were a result of the on-going seizures she had daily. My days were spent researching to reinforce my knowledge of her disorder and satisfy my hope and belief that the doctors were wrong in telling me my baby would not live to her first birthday. There were countless nights of no sleep, worry, and an overwhelming amount of sadness and anger. On a challenging day for Cameron, she could experience over 1,000 seizures, involuntary muscle spasms, and neurological tics. Her little body was stuck by needles and other invasive procedures more often than a child should be subjected to. She ingested numerous amounts of medication that was supposed to help her, but in length actually ended up harming her organs and taking her life. My little girl was a patient who doctors had no idea how to help, treated her as a science experiment, and gave up on helping her live.
Cameron’s first birthday was a defining moment in my life. Demoralized by the insensitivity inflicted by the doctors, I set out to prove the doctors wrong. I chose to focus my energy on her life…the time I had with her every day because I believed that she deserved that much. We began to be thankful for the time we had. I watched Cameron grow and change into this little person. Though she had many disabilities and many struggles along the way, we treated her just as she was our daughter. We began to have our own milestones: the day she smiled, the day she reached for something, the day she held my hand, the day she stood up while holding onto my legs. It was moments such as these that kept me going. When I stopped to think about all the things she couldn’t do or would never do, that was when I would fall apart. So, I promised myself that I would enjoy her for all the days she was here. This included plenty of family outings to places like, Disneyland, the park, restaurants, and visits to extended family who loved spending time with her, as well as celebrating each moment we thought would never come. She was my most challenging test of strength, but I continued to fight to provide her a quality of life. Though Cameron’s progress was slow, each milestone was a celebration.
As I reflect back on the incredible three years I shared with my daughter, I often remember the days where I embraced motherhood. The experiences I shared with Cameron forever changed my life and filled my heart with passion to make a difference in the lives of children with disabilities. After Cameron passed away in 2004, she continues to make a difference. My experience with having a daughter with a terminal illness and multiple disabilities empowered me to go back to school and receive a masters in special education and incorporate the Cameron Paige Foundation in her honor. Every student I work with, every event or scholarship we give out each year is a gift from my daughter and fills my empty heart. I miss her every day, as I fight my depression with every bit of energy I have, struggle with a deep hole of grief and sadness, and strive to continue to make a difference in the lives of people with disabilities, as well as, support other families who have children with NKH. My life is forever changed and although this journey has been difficult, I would do it all over again to have met my angel Cameron.