Emma loves to dance. The 7-year-old took her first steps to Bruno Mars’ “Uptown Funk” and has been spinning and twirling ever since. After she and twin sister, Sara, were born prematurely, Emma developed an infection that led to her needing a tracheostomy tube to breathe. While it helps Emma thrive, her mom Stacy Staggs has also wished that one day Emma wouldn’t need it.
“I have been hoping for the day that Emma could breathe on her own,” Staggs, 44, direct of community engagement with Little Lobbyist, who lives in Charlotte, North Carolina, told TODAY Parents. “We’ve been working with her ENT … to try to get us to this goal.”
But the recent COVID-19 surge has delayed that dream. Emma was scheduled for surgery to reconstruct her airway so she can breathe without assistance, which would have been a first for the almost 8-year-old. The family learned that her fall procedure had to be postponed until spring 2022 because there aren’t enough pediatric intensive care (PICU) beds as hospitals treat increasing numbers of children with COVID-19.
“The hospital has had to pause what they call non-urgent procedures that require PICU level of support. Of course, it’s a blessing that Emma’s procedure is being considered non-urgent,” Staggs said. “The reason we have to postpone it is not because we don’t understand the dangers of the COVID pandemic … it’s because the adults in the community have failed.”
Preemie birth and complications led to advocacy
When Staggs was pregnant she developed preeclampsia and HELLP syndrome, two potentially fatal conditions. At 27 weeks, she delivered her twin daughters, Sara, 2 pounds, and Emma, 1 pound 9 ounces. They went to the neonatal intensive care unit and during that time Emma developed a staph infection. After Emma struggled for weeks and received various interventions, she stabilized. But she had bilateral paralyzed vocal cords and needed a tracheostomy tube to help her breathe.
While she can’t speak, she has a “smile that lights up the whole room” and uses a communication device, some signs and nonverbal cues.
“She uses what they call total communication to express her wants and needs and that includes basically for me very strong facial expressions that are incredibly clear,” Staggs explained. “Emma and Sara live in the moment. Their needs are met. They are happy, active and excited.”
Having a tracheostomy tube means Emma needs to be supervised 24/7, though.
“We have the support at home with her equipment and the home healthcare nurses and my husband and I are unpaid family caregivers. We’ve learned her particular caregiving and we can respond to emergencies,” Stagg said. “We just have to keep that going until we’re able to safely have the procedure when the hospital has the capacity.”
Emma prospers thanks to home and community based services, but since the pandemic started the family has to be extra cautious. Neither girl could attend in-person school this year because the risk is too great if they contract COVID-19. Though, Staggs understands why hospitals needs the beds for children with COVID-19.
“As the case counts started to climb again, we’re seeing a much more expansive pediatric impact with the delta variant. I guess the pediatric hospital capacity is also being stretched,” Staggs said. “I wouldn’t want her to take up a ventilator for the child fighting COVID.”
Still, she feels frustrated by her state’s low vaccination rates and how many adults aren’t treating the pandemic seriously.
“I’m especially mad at what it means for our kids. We keep saying that we want them to be in the classrooms. We know what the steps are to take to get them more safely in classrooms but we are not doing it,” she said. “There are real dangers that exist for all kids, not just kids with complex medical needs and disabilities.”
Staggs, who advocates with the group the Little Lobbyist, shared Emma’s story, in part, to help people understand their roles in prolonging the pandemic and what it means for children like Emma. But she also hopes by sharing she’ll help others with similar challenges feel less alone.
“A lot of families don’t have the luxury of time or the privilege to be able to isolate like we are. They just don’t have choices,” she said. “I hope that families who are also having procedures postponed because of (COVID-19) will know they are not alone in their anger, frustration and grief.”
Before every procedure Emma has, Staggs explains what will happen. She hadn’t started preparing Emma for the airway reconstruction yet, but Staggs plans on telling Emma that it was delayed. While Emma knows many of her friends are back at school, she doesn’t seem bothered by it.
“She hasn’t expressed sadness or disappointment,” Staggs said. “Generally speaking, both girls are fairly sheltered from what’s happening.”
Staggs worries that “we’re losing critically important time in her development” with the postponed procedure. But she feels an unspeakable heartbreak that the delay causes.
“For Emma to be able to use her voice would be an absolute game changer,” Staggs said. “We could hear her words, hear her say things for the first time … the outcome of delaying her ability to use her voice makes me sad in a way that I really can’t express.”