My son was born with biliary atresia, a rare congenital disease.
He received a liver transplant and, as a result, is now immunocompromised.
Our lives are still not back to normal because we want to protect him.
After the past few years of pandemic living, my family and I are ready to return to a normal social life. We are ready for the pre-pandemic days when I could text a friend on a Friday night and ask, "Want to hang out?" In the good old days, I didn't ask about close contacts, vaccination status, or coldlike symptoms.
I am ready to return to a normal social life, but I can't. My baby is immunocompromised.
My youngest child was born with a rare disease called biliary atresia. Without medical intervention, biliary atresia is fatal by the age of 2. A liver transplant saved my son's life. But post-transplant, he is immunocompromised.
Being immunocompromised means having a weakened immune system. In the case of a transplant recipient, antirejection medication suppresses the immune response so that the body will accept the transplanted organ. Most transplant recipients take antirejection drugs for the rest of their lives.
I want to have a social life, but I also want to protect my son's health. So while many folks are returning to pre-pandemic habits, I still ask that pesky question: "We would like to hang out, but are you sick?"
I sometimes feel like a hypochondriac
Our friends have been exceedingly understanding, but I sometimes wonder whether anyone thinks I'm a hypochondriac. I often say my son is immunocompromised, but I don't always explain what that means. I wonder whether people know what it means to be immunocompromised; I didn't until it touched me personally.
When the immune system is weakened, a person is affected twofold: It is easier to get sick, and the effects of a sickness can be more severe. An illness that a healthy child could fight off might cause an immunocompromised child to be hospitalized.
It is recommended for immunocompromised kids to avoid being around people with contagious illnesses — including but not limited to COVID-19. It is important to safeguard against foodborne illnesses that can come from undercooked meat or spoiled food. Immunocompromised kids are also more susceptible to infection caused by construction dust or unclean water, as well as by bacteria from animals.
Another consideration for liver-transplant recipients is that a simple illness, such as a cold, can raise the liver enzymes and look like a bigger problem, such as rejection of the transplanted organ. Mild cases of rejection can be treated with medication, but it's still a serious issue that cannot be ignored. This means extra tests for the child — and extra stress for the family.
I am careful with my son's health, but he also needs to live
Honestly, it's scary to have a child who is immunocompromised. Life feels riskier. But I am realizing how important it is to find peace in my child's diagnosis, not just for me but for him, too.
Even though I ask about sickness before we socialize, I know that my son will inadvertently get sick sometimes. That is scary, but it's OK. In the planning stage, we are cautious, but in the actual living of our lives, we must be fearless.
After my son's transplant, when the medical team reiterated his immunocompromised status, I said, "I wish I could put him in a bubble."
His surgeon immediately said, "You can't. It wouldn't be good for him."
There is an irony in watching your child receive a life-saving medical intervention. Seeing your child so close to death, you truly want to put him in a bubble. But his life was saved so that he could live.
Read the original article on Insider