Daughter Josie born with heart defects

The past month has been a wave of experiences for Jennifer and Jay Rooney. The Berkeley couple became first-time parents on April 4 when their daughter Josie was born at Kaiser Permanente Oakland Medical Center. For the first day, everything seemed normal. Jennifer, an English teacher at Benicia High School, was thrilled with the prospect of being a new mother and overjoyed with her new baby.

However, issues arose when the pediatrician came in and asked to bring Josie into the nursery to listen to her heartbeat.

“The next thing I knew, she was being whisked off to NICU, and I knew things were not gonna go well,” Jennifer said.

Within a few hours, Josie was diagnosed with Tetralogy of Fallot with pulmonary atresia and major aortopulmonary collaterals, a condition in which a baby is born with heart defects which can impact the structure of the heart, limit the amount of blood to flow to the lungs and enable low-oxygen blood to flow out of the heart and into the rest of the body. According to the National Heart, Lung and Blood Institute, about 5 in every 10,000 babies are diagnosed with the condition. Tetralogy of Fallot recently gained attention when late-night television host Jimmy Kimmel revealed in an emotional monologue that his son had been diagnosed with the condition, a moment which Jennifer said has been very helpful in allowing others to understand her daughter’s condition.

Shortly after her diagnosis, Josie was transferred to the Lucille Packard Children’s Hospital at Stanford University, where she had open heart surgery done on her and has remained ever since with her parents at her side.

Jennifer has described the ordeal as “every parent’s nightmare.”

“It was really one of the worst things I’ve ever experienced because I was an in-patient at Kaiser and I couldn’t come with her,” she said. “I had to watch them get her ready for transport, and she was this beautiful, cute little newborn. It was so awful.”

However, amidst all the sadness, Jennifer has managed to find a lot of the optimistic elements in the experience. One has been the staff at the children’s hospital.

“They’re amazing here,” she said. “We’re so well-taken care of, and we’ve had a lot of support.”

Another positive aspect has been the vast amount of support the Rooneys have gotten from friends, family and even other ICU patients, whether through hospital visits, providing meals or even just expressing words of support. As a response to the kindness shown by others, Jay helped organize a fundraising campaign on the crowdfunding website Generosity. The initial goal was to raise $2,500 with the proceeds to be split between the children’s hospital and the Ronald McDonald House, which helped set up a room for the Rooneys near the hospital so they would not have to drive back and forth from Berkeley every day. However, the goal was exceeded in just two days, so they set up a new goal of $5,000. At press time, more than $4,000 has been raised overall.

The Rooneys also established a social media campaign based on a subtle but benevolent moment from the experience. One of the pediatricians taking care of Josie is a man named Rick, who Jennifer describes as a motorcyclist more than 6 feet tall in height. For the next two nights after Josie’s surgery, Rick took care of her, and the Rooneys came in after the second night to find that he had painted her toenails red.

“It was the sweetest thing,” Jennifer said. “It was really for us, and it was something to uplift us and give a little bit of happiness, and it really did. It became really popular in the unit, where a lot of people come to check out the baby, not just the nurses and doctors.”

This also inspired Jennifer’s aunt who remarked during a visit that she wanted to paint her toenails “Josie red.”

“That got me thinking, ‘Well, I wonder if we can get other people to paint their toes red for Josie,” Jennifer said.

This and similar moments turned out to be the catalyst for Josie’s Toesies, a social media campaign in which people post photos of themselves with toenails painted red in an effort to raise awareness of Josie’s condition and the Generosity campaign. The campaign received a major push by Jennifer’s workplace at Benicia High, which designated last Friday as a day for students and staff to wear red for Josie, many of whom complied. In addition, several of Jennifer’s pupils and colleagues have donated and offered support, and even Principal Brianna Kleinschmidt took to Twitter to post a picture of her and her daughter with their toenails painted red.

Jennifer expressed gratitude for the support she has gotten from Benicia High, where she has only worked since 2015.

“It really makes me feel like a part of the community,” she said. “This really cemented that Benicia is my school, and I really feel at home here. Colleagues I barely talk to have donated, have sent cards and have painted their toes red. The turnout has been really sweet, and it’s made me feel really connected to Benicia. I miss my students, and it really makes me look forward to returning to work and working with the kids.”

Jennifer said that Josie is “holding steady” and needs to gain weight so she can undergo the second stage of surgery. After she recovers from the surgery and is able to breathe on her own, she will be able to come home, Jennifer said.

Despite the difficult ordeal, the Rooneys have been very touched by the amount of support they have gotten and have viewed it as an example of the good of humanity.

“People really go out of their way to help us and it’s a pretty amazing experience,” Jennifer said.

Jennifer advises parents of children with similar situations to be strong and look at the positive things. She also views the situation as a major learning experience.

“I look at Josie and think, ‘Wow, what can I learn from her? Maybe she’s here to teach me something, and what kind of life lessons can I learn from this baby coming into our lives,’” she said. “I don’t know what I’ve learned yet, but I do know my life has irrevocably changed from here on out, hopefully in a good way. Think about what you can learn from your child if you can experience this.”

For more information on the fundraiser or to donate, visit Generosity.com/medical-fundraising/josie-s-toesies. To take part in the Josie’s Toesies campaign, paint your toenails in a classic red polish, take a picture and post it to a social media site along with a link to the fundraiser while tagging Jennifer or Jay and using the hashtag #JosiesToesies. Jay’s social media handles are @RamblingRooney on Twitter and Instagram, and Jennifer’s handles are @jenilola and @jenilola729 on Twitter and Instagram respectively. Their Facebook handles are Jay Rooney and Jenny Rooney. All genders are encouraged to participate.