A broken heart, but a happy, healthy spirit

Sixteen-month-old Briella Caniparoli was, quite literally, born with a broken heart. And through her struggles and her triumphs, her family says they have learned more about love than they would have ever thought possible.-á

From the beginning, Briella has continually beaten the odds. Congenital heart defects are the leading cause of death in infants in the United States, and Briella wasn't born with just one heart defect, she was born with three GÇô three conditions so rare that there isn't anyone else like her. She has survived multiple hospitalizations, a blood transfusion, a severe intestinal infection, open heart surgery and a major stroke GÇô all before her first birthday.-á

Feb. 8 marked the one-year anniversary of her open heart surgery. To Briella's parents, Sultan residents Chris and Mark Caniparoli, the date was fitting. Feb. 7 through 14 happens to be Congenital Heart Defect Awareness Week.

"It has been absolutely amazing watching Briella grow and seeing the progress she has made in the last 16 months. She came into this world fighting and has not stopped fighting GÇô smiling the whole time,GÇ¥ Chris said. "She has not only taught our family how to live but everyone who follows her story.GÇ¥-á

That includes her older brother, Conner, who has become his sister's most-devoted supporter. The 5-year-old has taken an active role as far as understanding her unique medical diagnosis, and is always eager to help her if she needs it. He enjoys learning about how the heart works and what makes Briella's heart so different.-á

Briella was born with Hypoplastic Right Heart Syndrome, an uncommon condition in which the right side of the heart is underdeveloped and malformed. She also suffers from Heterotaxy Syndrome, a rare disorder that causes certain organs to form on the opposite side of the body.

When Heterotaxy is combined with Dextrocardia Syndrome, Briella's third condition, it typically means that the heart is on the right side of the chest instead of the left. Heterotaxy Syndrome can also involve the spleen, which in Briella's case has resulted in asplenia, meaning she has one small, non-functioning spleen. Since the spleen helps to fight certain kinds of bacteria, Briella takes antibiotics twice a day to help bolster her immune system.-á

Doctors knew that she would need corrective heart surgery after she was born, but delayed the procedure for as long as they could so that she could gain both strength and weight. She underwent open heart surgery in February 2014 and was recovering well, but she suffered a major stroke about a month later.

But Briella defied the odds again, recovering swiftly from the stroke, which affected the whole left side of her brain. And since then, she hasn't looked back.

Last July, she won her first pageant, becoming Miss Gold Dust in the new Baby Miss division. Wanting to find some type of social activity that Briella could participate in other than sports, Chris reached out to pageant directors Patty and Katelyn Baller and asked them if they would be willing to create the category.-á

On Sept. 28, 2014, Briella celebrated her first birthday.

Briella is a charming, friendly girl who loves to smile and laugh. Her bright blue eyes twinkle as she cheerfully navigates her surroundings. She loves looking at pictures of herself and can say her own name and several other words. She loves electronic devices,-á especially cell phones, and she loves spending time with her brother. On Christmas, she enjoyed letting Conner take the lead when it was time to open the gifts.

"She just kind of sat there and let Conner do it,GÇ¥ Chris said. "She was excited when she got her clothes GÇô those were better than the toys.GÇ¥ -á

Briella checks in at Seattle Children's hospital every few months for appointments with her cardiologist and neurologist. She still has some stiffness in her right hand as a result of the stroke. Chris is planning on taking her to see a physical therapy specialist at children's to see what more can be done. She will use a removable brace to try to improve the mobility of Briella's right thumb.

"We're waiting for that to come in the mail and then she'll start wearing that a couple times a day to try and retrain that thumb,GÇ¥ Chris said.

They also use small, colorful stickers to help improve her dexterity.-á

"We're supposed to put them on her left hand so her right hand has to take them off,GÇ¥ Chris said.

Eventually, Briella will need an additional surgery; treatments for Hypoplastic Right Heart Syndrome are split into two procedures. Briella had the Glenn shunt operation during her first procedure, and will need the Fontan completion sometime in the future. Doctors also believed that she will require a heart transplant sometime in her late teens or early adulthood.-á

Chris and Mark know that they must be vigilant about their daughter's health. Briella's physician wants to limit her exposure to viral infections, so during cold and flu season, it's safest to keep Briella home and away from crowds.

They carefully monitor Briella's medications; she takes aspirin as a blood thinner, twice-daily Amoxicillin and Keppra, an anti-seizure medication.-á

"Our baby girl is amazing. We all love her so much GÇô she completes our family,GÇ¥ Mark said. "She is fearless and a fighter. And she has the most awesome big brother to make sure she is OK; he protects her whenever he can.GÇ¥

Chris has been working to spread awareness about Congenital Heart Defects, and as a result of her efforts, the City of Sultan proclaimed the week of Feb. 7 through 14 as Congenital Heart Defects Awareness Week.-á

About 40,000 babies born in the United States each year are affected by CHD. For more information visit www.cdc.gov/ncbddd/heartdefects.-á