When My Brother With Down Syndrome Got COVID-19

Like many people, I’ve been highly anxious since COVID-19 changed our world, nervous that my husband or I, or one of my loved ones would contract it. I’ve been especially worried about my 46-year old brother and only sibling, Pete, who has Down syndrome. I knew if he got COVID, it would likely be a severe case — he’s immunocompromised and has a history of bronchitis, pneumonia and lung issues.

Pete lives with my parents in California, while I reside on the opposite coast in New York City, and living 3,000 miles away from my brother only amplified my concern. Even though there’s not much I could do from even one mile away, being far apart made me feel even more out of control, adding a deeper layer to my distress and vulnerability.

So that I didn’t feel totally helpless, I urged my mom and dad to take extra precautions when leaving the house, if they needed to leave at all. They assured me they were being careful but I was skeptical; they were both still running errands and aren’t tech-savvy enough to do any internet shopping. I tried to order groceries online for them, but when only three items from my mom’s 30-item list showed up on their doorstep, it was clear that wasn’t a solution. I also sent them masks, hoping they fit properly and that they would wear them correctly.

The first few months of the pandemic, my anxiety rose along with the number of COVID cases. My concern eased up during summer, and even into fall. I thought, “OK, maybe everything will be all right after all. Maybe they are being safe and I am overthinking all of this.”

Then earlier this year, I found out my brother developed his usual wintertime bronchitis. Hmmm. My COVID radar was activated. “Bronchitis?” I asked my mom. “It could be COVID.” Next, my parents got sick with “a cold.” Now my COVID radar was blowing up. My mom lost her sense of taste and smell, a definitive symptom of COVID, but brushed it off saying she always loses these senses with a cold.

After Pete came close to fainting at home, my parents took him to urgent care. A lung X-ray showed pneumonia. The urgent care doctor advised my parents to immediately drive Pete to the hospital, where he was admitted upon arrival. And just as I had dreaded, his COVID test came back positive.

My fear was realized. The one advantage was he wouldn’t be alone — the hospital made an exception for my mom to stay with Pete since he has Down syndrome. I was extremely grateful for this unusual allowance.

Just as I was trying to absorb Pete’s situation, pacing my small New York City apartment and fielding texts and calls from my aunts, mom and dad, more bad news: Pete needed to be moved to the PCU – the progressive care unit.

The PCU is where COVID patients go who are sick enough to need extra care, but not sick enough to be in the ICU: Essentially the COVID patient’s limbo as they wait for this precarious disease to either infiltrate their body and make them worse, or benefit from the medicine that makes them better.

The thought of Pete in a more critical care unit made me feel like I was drowning, desperate for a lifeboat in a sea of panic. And as if that wasn’t hard enough, he was uncooperative and refused to keep the oxygen mask on, so the nurses had to put restraints on him. His arms were tied at his sides with cuffs. There was no mercy when the next day my mom’s COVID test results came back positive and the hospital staff told her she had to leave.

My sweet brother was all alone now in the hospital as COVID attacked his body and he struggled to breathe. I’ve heard many times that our fears are rooted in anxiety and often remained housed in our minds only. In this case, my fear made the leap from my mind to reality.

I video chatted with Pete the first night he was alone and it was one of the most difficult experiences of my life. Seeing him hooked up to so many tubes and wires, restrained, sedated and confused – I was not prepared for such a sight. I’m not sure I could have been. Each cough sounded like a volcanic eruption, oxygen escaping his lungs as violent as lava. I could see his labored breathing, his small frame struggling for air. It’s an image etched in my memory that will forever haunt me.

Fighting back tears during our video call, I tried to reassure him. But it’s hard to be convincing when your own doubt is so palpable. Pete was breathless from COVID, while I was breathless from worry. As Pete’s lungs were failing, my heart was aching. I started thinking the worst might happen, that my brother, who is the glue that binds our family together, might not make it.

A few days later, Pete started to get better. I was elated when he called and told me, his voice sounding stronger, that he was out of the bed and sitting in a chair. Still, I was hesitant to exhale until I knew he was further along in his recovery. When he started asking me his routine questions about what I was making for dinner and what my husband was doing, I felt even more relief. More encouraging news came when one of his nurses unhooked him from all of the devices that had been sustaining him and changed his oxygen tube to a smaller one. “She say I showing im-prew-ment,” he said proudly, struggling to say the long word.

Another obstacle that Pete hurdled later that week was moving into the “regular” COVID ward, where he stayed for three more days until he was discharged. Once he left the PCU, my mom was able to rejoin him, which brought me some peace of mind and closer to a decent night’s sleep.

Because Pete was on such a high dose of oxygen in the hospital, he needed to use it 24/7 at home while he slowly weaned off of it. When I talked with Pete on the phone, I could hear the hum of the oxygen releasing as it entered his nose. It was the most beautiful and soothing sound because I knew it was the tune of healing, the song of life, my brother’s life.

Now that the peak of the crisis is behind us (or so we hope), I wish I could say I’m less anxious, but I’m not. I know better than to take anything for granted. I’m eternally thankful Pete is recovering, but it scares me that so much is still unknown about COVID and its long-term effects. The doctors say my family has the antibodies which theoretically should protect them, but that doesn’t reassure me. Those antibodies can’t offer any promises. It’s a somber reminder there are no guarantees in life.

Living so far from Pete as he battled COVID has illuminated some important truths for me, and really tested my coping skills. My enduring love for my brother will always inhabit a large piece of my heart. No matter how close or how far apart we are, my worry for his well-being is as much a part of my essence as my dark hair. Knowing we could get through this crisis with so much physical distance between us gives me hope that there’s a lot we can withstand, especially when I remember miles are only numbers.