My son was born full-term in 2006 with several serious health issues, including urological and kidney abnormalities and lungs that were not fully developed. Due to these issues, which were undetected before his birth, my son’s left lung collapsed when he took his first full breath.
To save his life, my son was rushed to Children’s Hospital Colorado, where they placed him on a ventilator and inserted two chest tubes. The doctors told us that my son was in pain and suffering, and that we should consider taking him off the ventilator. This is something that no parent wants to hear or see their child go through.
In my head, I picked a date and decided if my son was still on the ventilator at that time, I would have the ventilator removed. Thankfully, the doctors decided they could safely take my son off the ventilator after 11 days. We were able to bring him home a week later, when he was one month old.
Another life-threatening challenge that my infant son had to overcome was becoming addicted to the pain medication fentanyl while he was on the ventilator and had the chest tubes. To help counter this, we had to give him methadone when we brought him home.
My son’s next health challenge was to undergo 12 surgeries/procedures to correct his urological and kidney abnormalities – all before the age of 5. We were also told that he would one day need a kidney transplant. That day came in the summer of 2011. His kidney function had decreased to the point that he had to start dialysis. We were taught how to do the dialysis at home so that we wouldn’t need to drive to Denver for the procedure multiple times a week.
Every night during the dialysis, I would talk to my son about how special it would be for him to receive a kidney and what his responsibilities would be to take care of this gift. I told him that either myself or his dad might be the one to donate a kidney to him. We also discussed that he might get a kidney from a stranger – and how he would need to take care of himself and his new kidney as part of honoring this gift.
In April 2012, when my son was 6 years old, we received a call in the middle of the night with the news that a kidney was waiting for him. While we rejoiced for this new chance at life for our son, we also knew there was a family grieving the loss of a loved one.
Through all of this, we have tried to give our son as normal a life as possible. Like other children his age, he’s attended public school and played with his friends. Looking at him, you could never tell that he is immunosuppressed, a condition that could put his health and life at risk if he gets an infection.
Then came the COVID-19 pandemic. Since its onset, we have worried how to protect our son. When in-person school resumed last year, we initially allowed him to attend school so he could have some normalcy and could be with his peers. But when the school had its first COVID-positive student, we decided that he needed to go into virtual school to safeguard his health.
This year, when the COVID vaccine was approved for 12- to 15-year-olds, I asked my son if he wanted to get vaccinated. He stated that, yes, he wanted to get the vaccine because he wanted to protect others from getting COVID and because it was the right thing to do. I asked if he was concerned about the possible side effects. Because he’s immunosuppressed, he knew there was no guarantee that he’d be fully protected or wouldn’t have side effects. But he was willing to get vaccinated for the sake of others, and hopefully to offer him some level of protection from the virus.
My son also chooses to wear a mask when he’s outside our house. If you ask him why, he says it’s to try to protect other people. He knows what it’s like to live with a serious chronic health condition, and he doesn’t want anyone else to have to go through what he’s experienced. He also knows how valuable life is – that because of his kidney donor, he was given a chance at life and wants to show respect for that person and this gift.
After speaking to my son’s nephrologist, we decided it would be better if he stayed in virtual school this year, since there was no mask mandate to start.
While my son has been fully vaccinated, because he is immunosuppressed, he is not building immunity to COVID. While we respect individual choices, we are saddened that our son is not able to socialize with his peers or attend milestone events such as homecoming because his health and life are at risk due to the widespread transmission of COVID in our community.
I wanted to share my son’s health journey and struggles for many reasons – to talk about how incredibly difficult it is for someone to be on a ventilator, what it’s like to be immunosuppressed in the middle of a pandemic, and what it’s like to want to do the right thing (get vaccinated and wear a mask) but still be worried about one’s health because of how widespread COVID is.
You and your loved ones may get COVID and survive, but my son does not have the same odds.