'What if it was your kid?' asks mom of immunocompromised child with COVID

Alison Chandra

"Mom, is the tooth fairy vaccinated?"

Seven-year-old Ethan Chandra looked at his mom with big eyes and a gap-toothed smile as he asked the question, anxious that because he had COVID-19, he might accidentally infect the fairy.

"I don't know, do you want to ask the internet?" his mom, Alison Chandra, responded. The boy agreed. They made a TikTok and asked the public. The answer came back that the tooth fairy was in fact vaccinated and that kids with COVID-19 get an extra dollar per tooth.

Ethan was quarantined in a bedroom, hooked up to a nebulizer in the shape of a little eagle and wearing what he calls his "shaker vest" — an inflatable, high-frequency, vibrating vest that helps him clear mucus from his lungs. He placed the tooth under his pillow and snuggled up to his best friend, a stuffed animal named "Pelly," the Pelican. The next day he had $2 from the vaccinated fairy.

Ethan was born with heterotaxy syndrome, a condition in which organs are flipped or missing. He had nine or 10 critical congenital heart defects, which required four open-heart surgeries and a permanent pacemaker. His condition resulted in him having multiple spleens, none of which work.

Spleens are essential to developing an immune system. They act as a filter for blood and recycle old red blood cells, as well as store platelets and white blood cells. They also fight off bacteria that cause serious illness. Because of this, Ethan is no stranger to masking, these machines he's using or even facing death. Most kids in his condition don't live past the age of 5.

The whole Chandra family had been so careful ever since the pandemic began in order to protect Ethan. Their two kids were taken out of school and attended online. They didn't eat in a restaurant or go to the store since early 2020. When Ethan had a low fever and some sniffles on July 29, Alison's birthday, they didn't think much of it. There was no way he could have been exposed to COVID-19. But when they took him to get tested, it came back positive.

He had two questions for his mom: "Do I have to go to the hospital?" and, "Am I going to die?"

Alison Chandra

Ethan Chandra, 7, smiles in the mirror showing off his lost tooth. He has heterotaxy, a condition that affects his internal organs and his immune system. He was diagnosed with COVID-19 on July 29.

Alison Chandra is a former pediatric ICU nurse, and the family had accumulated enough medical equipment that he didn't need to go to the hospital, but he would ask the second question many times as he sat, holding his mom's hand in the dark of his room during quarantine from the rest of his family. Although he was usually snuggly, the most he would do was hold her hand because he didn't want her to get sick.

"His heart has been stopped four times, technically. He's seen death. He's faced it down. He's a lot more familiar with it than most, and he felt that way. So yeah, he's alive, but there's still so much trauma that's associated with all of this," Chandra told KSL.com.

"I feel like I have given and done everything to keep my kid safe and I failed, but I do not want any other mother to feel what I felt when I saw that positive. There's not words at that point. I don't have the luxury of sitting and wallowing in that guilt. I've got to get up there and advocate."

She felt like she had gotten her children so close to being kept safe until they could get a vaccine. Family members got vaccinated. They wore masks. Their kids' mental health took a blow from being so isolated. And their kids had been quarantined for 18 months. And it all felt like it was in vain. Ethan still got sick, even though his mother spent hours on the phone with a contact tracer and could not figure out from where the virus could have come.

Ethan has mostly recovered, but his medical team still isn't sure what the long-term effects will be for him. When asked what it was like to have COVID-19, he doesn't complain about the physical medical trauma, but he says he didn't like not being able to see his family.

"I could only see my sister at the window or FaceTime her, and my mum sometimes came in with a mask," he said.

Chandra wishes she could talk to the people who fixate on the survival rate for children with COVID-19 and say it's no big deal. She wishes they could see her son's hole-y grin and put his face to the statistics, that she could line up 100 kids in front of them and ask them to choose which one dies.

"What if it was your kid? When we talk about statistics, percentages are very easy to walk past and ignore because they're just numbers, but every statistic is an actual story. It's a human life that has absolutely as much value as yours," she said.

"People might not come right out and say it, but when you talk about people with preexisting conditions being less-than, it's like saying, 'Oh, it's just the disabled kids. It's just the high risk kids. Those ones are expendable.' That's the message that our families get."

Dr. Erin Avondet, a pediatrician and a member of the Utah chapter of the American Academy of Pediatrics agrees. She said measuring the effect that COVID-19 is taking on kids simply by looking at the mortality rate is a "crude outcome measure." Instead, things like disability, medical trauma, medical expenses, lost income from parents staying home, loss of development as kids are isolated — all of these should be taken into account when examining the threat the novel coronavirus poses to kids.

So far, the Federal Drug Administration has not cleared the vaccine for children under 12 because the clinical trials have not yet been completed for children.

"We anticipate that it will be proven to be safe, but we have to, have to, have to, complete those clinical trials. While they share a lot of the same biology, kids are not tiny adults, so they need their own trials, but it looks like the vaccine will be available for kids within the near future," Avondet said. "When it does become available, if people are hesitant, talk with your doctor. Have a conversation with them. You're worried about your child and so are we."

This means that kids under 12 — especially those who are immunocompromised like Ethan — have to rely on society at large to protect them by wearing a mask and getting vaccinated, especially with the highly transmissible delta variant of the virus, which is more infectious than the chicken pox and ebola.

And COVID-19 is more severe in children whose immune system can't fight it off effectively because they are receiving cancer treatment, are on anti-rejection drugs after a bone marrow or live organ transplant or who have severe combined immunodeficiency, also known as "bubble boy disease," in which babies are born without the ability to develop cells that can fight off illness.

"The best way to protect an immunocompromised child is to create a ring around them of people who are safe," pediatric infectious disease specialist Dr. Andrew Pavia said. He explained that being "safe" entails being vaccinated, masked with a high quality mask with a good fit, social distancing and washing or sanitizing hands frequently.

"The perspective of parents is really important," he said. "When people don't universal mask for some political reason, they're putting other children like this at risk as well."

"There are cases like this nationwide and also here in Utah," Avondet said. "It's not something we have been spared from."

And with the surge in RSV, trauma from summertime activities and COVID-19, children's hospitals are filling up. Primary Children's Hospital is currently at 100% capacity and school hasn't even started yet, Pavia added. And while there are general principles for taking care of an adult in intensive care, which means that specialized doctors can pitch in at ICUs when things get bad, the same doesn't apply for children.

Doctors and nurses require specific training for pediatric care, so pediatricians do not have as many trained health care workers who can help. Then, adding in the intricacies of treating children with different kinds of cancers or immunosuppression, and there are only a handful of staff who can help the children. So, if these children with medical complications need treatment, even if it's not for COVID-19, they may not be able to get the help they need as quickly as they need it.

For instance, Ethan's battery on his pacemaker is getting low and right now there is not a bed in the hospital available for him to have it replaced. If one opens up, he has to receive very specialized care in a very specialized setting.

"It's not just the COVID cases in the hospital, it's the overall strain on the health care system," Chandra said.

And it's frustrating to her that people see that strain and are still unwilling to get vaccinated or wear masks because it might encroach on their comfort or freedom.

"A pandemic is not the time to only worry about yourself," she said. "Some people are hesitant about vaccines, and I get it. But if you're not going to get vaccinated, wear your mask and stay home.

"It's your turn to stay home. We've done our turn. Let my kid go to school again. Let my kid go to the supermarket again."

from Deseret News https://ift.tt/37YiGtD