“Dumb blood.” That was how my son Brett described why he was having a catheter surgically implanted into his chest at the young age of seven.
Brett was born three months early in April 1980. He was a premature twin and weighed only 2 pounds 3 ounces; his brother Rhett weighed 2 pounds, 6 ounces. At the time, preemies this size were given a 50 percent chance of survival, and sadly Rhett died when he was only a week old.
I hardly had time to grieve. Four days later, Brett had surgery on his heart. He spent the first two and a half months of his life in the hospital, and received 35 blood transfusions from 12 donors; this was because he was so tiny that when they drew blood for various tests, they had to replace it. Brett came home two days before his due date weighing a whopping 4½ pounds. As my little baby grew, he was always small for his age. He also had more than his share of infections and seemed to live on antibiotics.
I was working in a medical office in 1987, the year Brett turned seven. Our physicians were baffled by patients who would come to the office and later be admitted to a hospital, where many of them would eventually die from a scary new virus called HIV. I happened to watch a special on TV one night about HIV. The program explained who was at risk for HIV: people who shared needles, who practiced unsafe sex, and people who received blood or blood products prior to 1985.
It was like a light went on and it all made sense. I had figured out what was wrong with Brett – why he was always sick. As you can imagine, once the thought entered my head, I was obsessed by it and wasn’t sleeping very well. I called Brett’s pediatrician and told him my fears. He said that it was highly unlikely, but that he would order the test anyway.
You can guess the outcome. Brett tested positive for HIV.
With tears in his eyes, our pediatrician referred Brett to an infectious disease specialist in Atlanta, who in turn referred us to the National Institutes of Health (NIH) in Bethesda, Maryland, where they were conducting clinical trials with HIV-positive children.
Months passed before Brett’s appointment with NIH – and with the waiting came the worrying. In 1987, HIV-positive people had very little hope. We never heard of people living with AIDS, only people dying from AIDS.
We didn’t share the complete diagnosis with Brett; we felt he wouldn’t live long enough to put him through the horror of his fate. We simply told Brett he was going to NIH to see if they could find out why he was sick all the time.
On that first visit, we learned that Brett’s T-cells were extremely low, that he was accepted into an AZT trial, and that the AZT had to be administered via catheter. On the morning of his surgery when they came to take him, a nurse asked Brett if he understood why he was having the surgery.
“Yeah, I’ve got dumb blood,” Brett replied.
Brett and I traveled to NIH more than 100 times over the next 13 years in search of a new, better way to fight the “dumb blood.” As soon as a new drug became available for trial, Brett was on it. He was a human guinea pig, but the drugs kept him alive.
In 1989, Brett got the chicken pox – a rite of passage for many kids, but terrifying for someone like him with a compromised immune system. His chicken pox turned into severe pneumonia, and we were consulted on how far we could go on life support. He surprised us all and got better. It was then that we realized he needed to know what his body was fighting.
We sat him down in our living room one Sunday morning that summer and told him that he was HIV-positive. We explained that the virus was the reason he was always sick, and why he had to take the horrible-tasting medicine. We also explained that NIH was working hard to find a cure, and that he was a part of all of that hard work. He was fighting the “dumb blood.”
Then we took the next logical step. We followed up our talk by contacting the school system. We were happy to find out that our county already had an HIV policy not only for students, but for faculty as well.
After a meeting between the schools’ superintendent, physician, and Brett’s personal doctor, it was determined that Brett was not a threat to any students and would be allowed to continue his education. Another meeting to answer the questions and concerns of parents followed. It was one small triumph in our fight, and we breathed a sigh of relief.
Right before Christmas that year, Brett decided that he wanted to tell his classmates about his “dumb blood” at his weekly show-and-tell. He said that he was stressed from keeping this secret.
I attended class with him that day, sitting anxiously where he could see me. I wasn’t sure what would happen. Courageously, Brett stood up and said, “As you all know, there is a student at our school with HIV I just want you to know that I’m the one, and I hope you will still be my friends.”
Several of his classmates raised their hands to assure Brett that they remained friends. One little girl, Jamie, gave Brett a little plastic toy that I still cherish to this day.
It was on my way home from Brett’s class that I realized the fight didn’t stop there. We knew that Brett’s presentation would bring a wave of rumors and questions. We decided to get in front of them, and called our local newspaper to share the story our way.
The next morning, Brett’s photo appeared on the front page of the Atlanta Journal Constitution. The following Monday, the paper had an article published by the United Press; Brett’s little classroom “show and tell” revelation was now worldwide. Our phone never stopped ringing: Good Morning America was calling, and radio stations from across the country wanted to interview Brett.
Brett handled it with a strength I’ll always admire – and our community responded with more support than I could have imagined. We were all in this together.
Over the years, Brett became a “youth spokesperson” of sorts for children living with HIV. I appeared alongside Brett on several television shows. He was the Youth Spokesperson for AIDS Walk Atlanta for 15 years, and walked beside Elton John during the first walk. We also became very involved with the Elizabeth Glaser Pediatric AIDS Foundation, speaking and advocating on their behalf.
And even with his “dumb blood,” Brett had so many wonderful experiences. Brett was granted a wish to see a volcano, so we traveled to Hawaii and spent10 glorious days there. Brett swam with dolphins in the Florida Keys. He rode in a hot air balloon in the Macon Cherry Blossom Festival. At 16, Brett got his driver’s license, and his own car soon afterward. In 1999, he graduated from high school. In 2002, he moved out, got his own apartment, and had a full time job.
These were all milestones that we never dreamed Brett would achieve after our lives were shattered in 1987 with the news that he had HIV – all the while taking mega-doses of antiretroviral drugs. I couldn’t have been a prouder mother.
In 2007, when he was 27 years old, Brett was diagnosed with MAI (mycobacterium avium infection) and spent a week in the hospital. The drugs to combat this infection were many and the side effects were horrendous. He had developed such acute neuropathy in his feet that he could barely walk. His fingers struggled on a computer keyboard. Diarrhea was constant. He barely weighed 100 pounds.
It was then that he made up his mind that he was done taking these medicines; he couldn’t remember life without them. As hard as it was as a mother to respect his wishes, he was an adult. I remained an ally in his courageous fight. In June 2007, Brett moved home with me and hospice care was started.
Hospice help came once a week. A nurse would check on Brett, and a social worker would spend an hour or so with me. On August 1, around lunchtime, Brett slipped into a coma. He died later that night in his own bedroom, with his favorite reggae music playing over his speakers.
Brett has been gone for almost five years now, and there isn’t a day that goes by when I don’t think of what might have been. He crammed a lot into 27 years – a lot more than most do in a lifetime. I miss him dearly, but I find comfort in knowing that I did all I possibly could for him while he was on Earth.
I still get signs from him. Last Mother’s Day, while folding bed sheets, something fell to the floor. I looked down and gasped; it was a pair of Brett’s boxer shorts! I keep them in my dresser and smile every time I see them.
Sometimes in life we just have to play the hand we’re dealt and try to make the most of it. I can look back now in awe of what Brett and I went through but I wouldn’t change one minute of those 27 years. To say that Brett was a piece of work would be an understatement – he definitely was a challenge. Sometimes you don’t know what you’re made of until you are face-to-face with the issue.
I am so thankful to all those who fought for Brett, and who continue to fight for the children, mothers, and families affected by HIV. I am certain that Brett’s life was longer because of the support we received from so many.
We must continue to work together - Brett would have wanted us to – so that we can see the end of pediatric AIDS. Until then, I’ll continue to fight. I hope you join me.
Marty Mitchell is an Ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, educating people around the United States about pediatric AIDS and sharing the story of her son, Brett Lykins. Marty lives in Georgia with her husband Mike, and is an amateur beekeeper.