Surrounded by baby goats and a spunky horse named Chance outside his Madera Ranchos home last month, 11-year-old Phillip Barba talks affectionately about his adoptive parents.
“Last time I was in the hospital, what really calmed me down was thinking about how my life would have been without anybody to help me or adopt me. … And also, I always think about rainbows and unicorns! It actually helps me go into a happy place, I don’t know why.”
This sunshiny child was a 4-month-old ward of the state when he met his adoptive mother, Dawn Barba, a nurse at the Valley Children’s Hospital for the past 26 years. Phillip was born exposed to drugs and with one side of his heart critically underdeveloped, called hypoplastic left heart syndrome. He’s had four open-heart surgeries at Valley Children’s – the first at just 12 days old.
Despite these setbacks, the first time Dawn laid eyes on Phillip – then sick with the flu in Valley Children’s Starship Apollo unit that treats children with respiratory issues – she saw a baby who looked healthy. Born 8 pounds, 6 ounces, Phillip was big and full of life.
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I just saw this beautiful spirit in this little boy.
“He was always happy, he was happy,” Dawn says. “He smiled all the time. … I saw these bright eyes and the smile and I was like, ‘Oh my God, you are just beautiful.’ He has a beautiful spirit.”
She describes it as an “I-want-to-live spirit.”
“When he was in the ICU and nurses told me he was pulling out his tubes, the nursing part of me said, ‘Oh my God, don’t do that! Don’t hurt yourself!’ But my motherly instinct was like, ‘You fight, baby, you fight! Fight with all your might and get through this.’ ”
And Phillip has, time and time again, and always with a smile.
Look for The Fresno Bee’s special Kids Day section Tuesday, March 8. Volunteers will be on street corners selling the paper for $1 to raise money for Valley Children’s Hospital.
His positive spirit captured the hearts of Dawn and her husband, Tony. They were considering adoption after learning they weren’t able to have children. They went to visit Phillip together before his second open-heart surgery when he was 5 1/2 months old and “blue as a blueberry.”
“His foster mom at the time said, ‘Look, there’s your new mommy and daddy,’ and he tried to smile and he was just miserable,” Dawn recalls. “Even through all of this, he still tried to be as happy as he could be. That was just amazing to me.”
After his surgery, she went up to visit him. Seeing Phillip covered in tubes and lying in an adult bed alone made her realize she couldn’t bear to watch him go through life without a loving family.
Don’t take anything for granted because it could be taken away in a heartbeat.
A co-worker added to those feelings: “You may not need him, but he needs you.”
A couple of days later, in May 2005, after receiving a Mother’s Day card from Phillip’s foster mother with his footprints printed on one side, the Barbas started the process to adopt. He was living with them a little more than two months later as a foster child as adoption paperwork cleared. A judge helped expedite the process for the Valley Children’s nurse. Phillip legally became their son in April 2008 when he was 3.
Dawn is just one of a number of Valley Children’s nurses who have adopted a patient over the years.
Being a mom of a high-needs child has made me a better nurse, not the other way around.
Phillip loves his parents.
“They are really, really fun,” he says. “They’re funny. They’re nice. They’re honest, truthful. … They pretty much, I think, are like the coolest parents.”
They love him, too.
“He’s very outgoing, loving,” his dad says. “He’s funny, very funny.”
Valley Children’s continues to be a central part of their lives.
In addition to four open-heart surgeries – the longest lasting 21 hours – Phillip had a fifth surgery that required his chest be opened to change wires on the outside of his heart that connect to a pacemaker in his abdomen. The device sends electrical pulses to his heart to prompt it to beat at a normal rate. He’s also had more than 20 cardiac catheterization procedures, in which a tube is inserted into a large blood vessel to assess how the heart is doing.
These kids are making history.
His heart condition caused him to suffer a mild stroke, which led to learning disabilities, although he’s well-developed socially.
“People meet him and they are like, ‘Whoa. How old are you!?’” Dawn says. “But he’s not bratty about it. … He’s very appreciative of everything he’s given. That’s one thing that I think he’s taught me, how to appreciate.”
Learning to slow down is part of that. Phillip gets out of breath more easily because his heart lacks a muscular left side, which would normally do all the pumping. Surgeons essentially “replumbed” his heart to make the right side do that work.
“Eventually, that pumping mechanism will not sustain his life – but it could,” Dawn says. “They don’t know.”
Phillip might need a heart transplant, but it’s not something family or doctors are looking at currently because he’s doing well with the surgeries he’s had. One of the Barbas’ friends has a 15-year-old daughter with a similar defect who has been on a transplant list for a year.
On Christmas Eve of 2014, Phillip was rushed to Valley Children’s for a surprise surgery to replace a pacemaker doctors said could suddenly stop working. (Phillip’s body goes through pacemakers faster than the average, Dawn says. He’s currently on his third.) After that surgery, the Barbas decided to move to the country.
Phillip loves animals and wanted a horse, and for years his parents told him they’d get a ranch someday. That day came in September, when they moved to Madera Ranchos. Phillip now helps care for lots of animals on their 3-acre property: seven chickens, five quail, four goats, three cows, three sheep, two horses, two cats, a dog and a potbellied pig.
Phillip loves his new home, especially the shooting stars.
Every time one passes by, I just pray that my heart condition can go away, and also that the world would never end and everybody would be healthy, every day.
“Every time one passes by, I just pray that my heart condition can go away, and also that the world would never end and everybody would be healthy, every day, and all animals would be safe from coyotes and everything.”
While Phillip’s future remains uncertain, his parents are certain they made the right decision in adopting him.
Dawn says she’s been a nurse long enough to know there are no guarantees in life.
“It doesn’t matter how long God is going to give him to me, I’m going to make the best of it and we’re going to give him the best life possible. … Live every day to the fullest. Live and love, and love and learn.”
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