When Angel Fiorini visits parents of a child with congenital heart disease, she walks into the hospital room to offer more than a gift bag.
She’s a volunteer with the Spokane nonprofit Beats & Rhythms, a group that provides continuing support to families and their children born with serious heart conditions. Additionally, Fiorini can relate to what those parents are experiencing.
About six years ago, Fiorini was there after the birth of her son, Vinnie. She knows a parent’s worry for a fragile child undergoing surgery or intensive care. They often face long hospital stays, complicated medical terms, then children growing up with heart conditions.
“My son was diagnosed with a second-degree heart block when I was seven months pregnant with him,” said Fiorini, an Otis Orchards resident. “He was diagnosed with Long QT Syndrome at birth.
“We spent the first two months of his life in the PICU. He has a gene mutation that causes an electrical malfunction basically in his heart rhythm. At 7 weeks old, he got an internal heart defibrillator.”
Vinnie, now 6, still requires cardiac care and medication. For more than a year, his mom has volunteered under a new Beats & Rhythms’ program to take cardiac care bags to other families newly impacted by a child’s congenital heart defect.
Founded by local parent Brenda Corsaro in 2002, Beats & Rhythms also organizes monthly activities for kids and families dealing with these conditions. It runs a summer camp for older children.
If parents agree to a visit, Fiorini is among the group’s volunteers who brings gifts and information about the organization. She said her hope is to help the families know they’re not alone.
“We put together cardiac care bags for families that have blankets and journals, hygiene products and coffee cards, things we know will help families,” Fiorini said.
“I felt honored to become a part of it having come from living it. I was excited to go in not only to deliver these care bags but also offer support to families as someone coming from experience.”
Vinnie’s defibrillator device will be a lifelong requirement, and he is due in about a year to get it replaced.
His medicine helps to keep his heart rate as normal as it can be, Fiorini said. If Vinnie outgrows his dosage, his heart beats in an abnormal, erratic pattern that can cause cardiac arrest. Overall, his health can be fine, then suddenly dip.
“We go through these periods where it’s very well managed. You’d never be able to tell there is anything wrong with him,” Fiorini said. “Then there are times it’s like getting hit by a bus. He’s not doing well, his medication dosage needs to be increased, and he starts to have episodes.”
“His condition is in a group of syndromes that are referred to as sudden arrhythmic death syndromes, and the only symptoms are fainting or cardiac arrest.”
But his current defibrillator device has kept him alive. “He’s received 13 shocks from his defibrillator, which in translation means his device has saved his life 13 times.”
Congenital heart defects affect about 40,000 babies in the U.S. each year. Beth Dullanty Connors sees these conditions routinely as a nurse and inpatient coordinator for congenital cardiology at Providence Sacred Heart Children’s Hospital.
“The incident of congenital heart disease is 1 in 100, and that has pretty much stayed the same the entire time I’ve been in nursing, which is 40 years,” said Dullanty Connors, who also volunteers as Beats & Rythms’ treasurer.
But one rate has changed. “The survival rate for congenital heart disease is now 97%, so we have most of our kids living into adulthood. That has improved for several reasons. One is early detection, so about one-third of babies are diagnosed in utero.”
In recent years, more issues are found through mandated newborn screening for congenital heart disease. Survival rates also have risen with surgical advances, specialized regional cardiac care centers like in Spokane and more emphasis on long-term medical followups, she said.
Among common congenital heart conditions, specialists see structural defects such as holes in the heart or problems with the valves, she said. Any of the four valves might be absent or malformed. More than 40 congenital heart defects exist.
As families face such challenges over the years, Beats & Rhythms volunteers are there to offer connections and support, Dullanty Conners said.
“The mom of one of our teens started Beats & Rhythms at first as a teen support group, and as it’s grown, we’ve kept adding services,” she said. “In the early days, we’d send kids to surgery and didn’t know if they’d survive because then the survival rates were relatively low.
“Now it’s about improving lives and making sure our children who are going to grow into adulthood do so with psychological support and with parents who are well-supported.”
The nonprofit’s programs include:
Heart to Heart Mentoring, for parents with children recently diagnosed to pair with a trained mentor who had a similar experience
UpBeats, a group for teens with congenital heart disease
ACHD Group for adults who have grown up with a heart condition
Cardiac Connections for year-round events for all family members so kids and families can connect
Beats & Rhythms’ summer camp at Ross Point in Post Falls for ages 9-15 at no cost to children diagnosed with a cardiac defect, disease or pulmonary hypertension
Cardiac care bags, delivered to families of hospitalized children
“We started the cardiac care bags only about a year and half ago. We’ve given over 90 bags,” said Nettie Jensen, a child life specialist and Beats & Rhythms’ activity coordinator. “It’s all with volunteers and donations.”
Fiorini joined the cardiac care bag project early and has visited a number of families. She’s built relationships with a few, but all seem grateful for the initial outreach, she said.
“It’s comforting to know you’re not alone, that there are families, moms and dads, who have gone through it before.”
The visits also can be delicate regarding what to say, she added, because a few families don’t get to leave the hospital with a child. She can offer just to listen.
“It’s really grounding. It’s not easy, but it’s an incredible honor to be accepted in during such a fragile time.
“All I can offer is a fact that there’s a community here in Spokane and more support for families.”
Today, Fiorini also regularly takes her son to Beats & Rhythms’ family activities during special occasions and holidays. In a few years, Vinnie can go to the group’s summer camp in Post Falls.
Such contiuing activities help children meet and see other kids with similar heart defects, Fiorini said. “It lets those kids connect with other kids to let them know they’re not alone.”
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