Kernika and Savera's CHD Story

Kernika Gupta comes from a family of physicians. Her mother, siblings, aunts, uncles and many cousins all work in health care. 

So when her daughter Savera Patel was born two years ago with a heart condition – four years after her first daughter Veera was born perfectly healthy – Gupta’s resources were as close as a phone call away. Even still, nothing takes away the reality of having a baby with a congenital heart defect.

“I vividly remember the moment they told me,” said Gupta, who lives in Philadelphia. “My heart dropped. They said she has a bicuspid aortic valve. When I’d been thinking about going to medical school, I had spent time with my uncle, a pediatric cardiologist, and I saw kids who had that.”

Later, her uncle told Gupta that when he heard about Savera’s diagnosis, “It felt like the earth had dropped from below him.”

Her pregnancy had been normal, and because of the way Savera was positioned in Gupta’s uterus, the defect wasn’t spotted until she was born. Her condition, which is more common in older adults than in babies, occurs when the aortic valve doesn’t form properly, resulting in restricted blood flow from the left ventricle to the aorta. It also sometimes affects pressure in the left atrium of the heart, which can cause further damage to the heart.

Gupta also has a heart issue — patent foramen ovale, a type of hole in the heart that eventually closes on its own. An estimated 25% of the U.S. population has it, and Gupta didn’t even know she did until she suffered a small stroke at age 21. She sees a cardiologist routinely; otherwise, she’s healthy. 

She thinks about her daughter’s issue much more.

“She wasn’t gaining weight for a while and we were in constant contact with the pediatrician,” Gupta said. “If babies don’t grow, that could indicate something going on with the heart. Even now, if she has an off day with eating, I’ll panic. Whenever we go to the doctor, I’m holding my breath that she’s gained weight.”

Additionally, any sort of bacterial infection – like cellulitis of the eye, which Savera had last summer – can go through the bloodstream and affect her heart. 

“It takes her a little longer to recover from things,” Gupta said. “In the back of my head, I’m waiting for that other shoe to drop.”

Savera’s condition is lifelong, and the first year was especially harrowing.

“She had a couple of instances where her lower legs and feet started to turn blue,” Gupta said. “It was at night, and I called my uncle, who walked me through everything. The next day, she was fine.”

Not until Savera turned a year old did Gupta feel like she could take a breath. And when she did, she began thinking of the times she could call on her uncle, her siblings, her mother — she’s blessed, she said, to have those resources at her fingertips and wants to make that more attainable for others dealing with medical conditions. For her, there is nothing more critical than a trusted support network.

“That’s my why; it’s why I want to give back,” she said.

She and her husband Vishal Patel spent months deciding how they could best help parents going through circumstances like theirs. Through the American Heart Association, they decided on a gift that funds an initiative focused on delivering heart-related supplies for new moms and infants living in underserved areas of Philadelphia. 
 
Included are blood pressure cuffs as well as infant CPR kits and educational materials about heart health. 
 
“We’re partnering with community organizations that have doula networks, and working alongside them to deploy these kits,” she said. “Doing so will increase the likelihood of being able to educate new moms about hypertension and other illnesses that relate to your heart. At such a vulnerable and often overwhelming point in your life, it makes the world of a difference to have a trusted individual by your side. We can’t have healthy babies without healthy mothers.”

As tough as Savera’s diagnosis has been, Gupta has found blessings in all her family has been through as well.

“This opened me up to the reality of how complicated and exhausting health care can be,” she said. 

“I’m such a planner, so Type A,” Gupta said. “Everything was so overscheduled and the first year of her life was centered around doctor appointments. It was all about making sure she was gaining weight and staying healthy, so much so that I didn’t let myself enjoy her.”

Yes, she still worries; going with the flow isn’t easy for her. But Savera is doing well, and Gupta shows her gratitude by reaching out.

“People need help navigating this complicated system and having emotional support while doing it,” she said. “I am grateful I can channel all this to make a change somewhere.”