On Sunday, Briella Caniparoli celebrated her first birthday, a miraculous feat given the struggles she’s had to overcome. This is Briella’s story, from a devastating heart diagnosis before birth to hope for a bright future.
Briella with Dr. Agustin Rubio at Seattle Children’s Hospital
Christina Caniparoli and her husband, Mark, came to Christina’s 20-week ultrasound at a local hospital with no expectations except to learn the sex of their second child. Four hours later, the couple left with very different news.
“During the appointment they kept leaving the room and coming back, then leaving again,” Christina Caniparoli said. “Something was definitely not right.”
Doctors told the Caniparolis that their baby had significant heart defects, and most likely had Down’s syndrome. The parents-to-be were presented with the option to terminate the pregnancy.
“It just wasn’t an option for us,” Christina Caniparoli said. “I wasn’t ready to just accept what they were saying, but even if they were right, we would deal with whatever it was.”
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The following is part 1 of a two-part series on ECPR, a combination of CPR and ECMO offered at Seattle Children’s Hospital to save the most fragile patients’ lives. Here, we tell Hannah Mae Campbell’s story and how ECPR saved her life. In part 2, we’ll discuss how Seattle Children’s has spearheaded a first-of-its-kind ECPR simulation program this year to improve the process that allows the hospital to save patients in a time of crisis.
Today, Sept. 24, marks a remarkable milestone for the Campbell family – the end of a long, tumultuous journey that began the day their daughter, Hannah Mae Campbell, was born. It’s the anniversary of the day Hannah received a new heart, and a chance at life two years ago.
Hannah’s journey begins
When Jennifer Campbell of Everett, Wash., was pregnant with Hannah she prepared as much as she could and followed all the prenatal guidelines to a tee. This was her first baby and she, as all parents do, wanted her little girl to be perfect.
Once Hannah was born on May 18, 2012, Jennifer and her husband Jon remember how the joy of seeing their little girl for the first time quickly turned into terror. Hannah was lethargic, her hands and feet were blue and her heart was rapidly pumping at 253 beats per minute. The room at the local birthing center quickly filled with doctors and then Hannah was taken to the neonatal intensive care unit (NICU). Twelve hours later, Hannah was transferred by ambulance to Seattle Children’s Hospital.
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Mason Garka, 6, holds a photo of himself as a baby, just before his surgery on July 4, 2008
Independence Day has a unique meaning for Greg and Kelsey Garka. It was on July 4, 2008, that their brand new baby boy, Mason, had his chest closed after the first of three life-saving heart operations at Seattle Children’s Hospital.
“His recovery from that day forward went text book well,” Kelsey Garka said. “It was the first step toward the spunky, independent boy he is today.”
Mason, who just celebrated his sixth birthday, was born with Hypoplastic Left Heart Syndrome (HLHS), a congenital birth defect that affects the left side of the heart, which pumps oxygen-rich blood to the body.
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Christal Hays, of Anchorage, Alaska, is only 18 years old, but she is wise beyond her years. A former patient of Seattle Children’s Hospital, Hays has been through a lot in her life. Diagnosed with genetic nephrotic syndrome and heart disease at only 8 months old, she had a kidney transplant and underwent open heart surgery at Seattle Children’s and grew up traveling to and from Seattle for treatment. For Hays, her untraditional childhood was normal. And from this experience, she has a message for others, “You are more than your disease.”
It’s a message that is now inspiring others on a national level thanks to an essay she decided to share with the world. Read full post »
According to a new study that will be highlighted this weekend at the Pediatric Academic Societies (PAS) annual meeting, women, particularly younger women, are still smoking while pregnant, putting their newborns at risk for congenital heart defects.
Patrick Sullivan, MD, lead author of the study and clinical fellow in pediatric cardiology at Seattle Children’s Hospital, said maternal smoking seemed to place newborns at a 50-70 percent greater risk for specific heart anomalies. The risk was highest in the heaviest smokers. Read full post »
Julie Kobayashi, a 12-year-old girl from Hawaii, is Seattle Children’s third patient to receive the HeartMate II ventricular assist device (VAD), a device that allowed Julie to leave the hospital while waiting for a life-saving heart transplant. This is her story, from failing heart to transplant.
Julie Kobayashi started feeling sick on a Saturday in November 2013. She felt nauseous, but didn’t have a fever. The symptoms reflected that of the stomach flu. Her family wasn’t overly concerned at first. They thought the symptoms would subside and their daughter would be back to her normal self in no time. For Julie, an active and fun-loving 12-year-old, she usually didn’t let anything slow her down for too long.
When Monday rolled around, Julie felt well enough to go to school. She enjoyed school and had been working really hard practicing her clarinet for an upcoming concert. Missing school wasn’t an option in Julie’s mind. Read full post »
In honor of American Heart Month, we are sharing Gabrielle’s incredible journey from sick baby to healthy toddler.
Christen Simon was 18 weeks into her third pregnancy when a routine ultrasound revealed the unthinkable: a serious birth defect. The daughter that Christen and her husband would call Gabrielle would need a heart transplant soon after birth.
“At that point I was in shock,” said Simon. “I didn’t know heart defects existed before that point in time. It wasn’t even in my scope of possibilities, not for my daughter.” Read full post »
In honor of American Heart Month, we are sharing a series of stories about some of our incredible heart patients who have overcome the odds.
Nobi Johnson was a seemingly healthy, charismatic and extremely athletic 13-year-old girl. She excelled at sports and was a star on the basketball court and soccer field. There was nothing she couldn’t do if she put her mind to it, which made the diagnosis of an anomalous coronary artery difficult to understand. Sports were out of the question, due to the unforeseen heart defect. How would Nobi find her happiness again? It would take over a year, but Nobi would find herself back on the court, thanks to her determination to play again and Seattle Children’s and Mary Bridge Children’s Regional Cardiac Surgery Program. Read full post »
Scientists at Seattle Children’s Research Institute are using a unique species of fish to find out why some babies are born with heart malformations and how a defective heart might repair itself.
About one percent of U.S. babies are born with a heart defect, requiring medication, surgery or catheter procedures. While the condition is common, the cause is often unknown. Multiple genes are believed to contribute to heart malformations so genetic testing is difficult.
That’s where the minnow-sized zebrafish comes in. Zebrafish are ideal research subjects because they carry many of the same genes that are found in humans, including those that contribute to heart defects. Zebrafish also have transparent embryos that grow outside the mother, allowing scientists to easily observe their development. Read full post »
The heart that connects Rachel Cradduck to a family in Mexico was transplanted into her son Ethan Robbins at Seattle Children’s Hospital when he was just five months old. It came from a baby who died in a California hospital after her family traveled there for medical care.
“A heart transplant is a bittersweet thing,” says Rachel. “During Ethan’s transplant and every day since, I have been deeply aware that another family suffered a tragic loss. I wanted to thank them for the incredible thing they did.”
Rachel had her chance last fall – about a year and a half after Ethan’s transplant – through a unique video teleconference arranged by Seattle Children’s Heart Center and Telemedicine teams at Children’s, and on the other end by Sierra Donor Services (SDS), the Sacramento-based organ procurement organization that helped facilitate the transplant. Read full post »