A true miracle.
How great for Thanksgiving. A wonderful gift.
Giving thanks: Baby’s new heart is a blessing to Avondale family:
by Karina Bland – Nov. 25, 2010 12:00 AM
The Arizona Republic
Seven-month-old Sienna Hoagland is home from the hospital with a new heart, just in time for Thanksgiving, and there are no words to adequately express her family’s gratitude, not even on this celebrated day of thanks.
The baby girl, the youngest recipient of a successful heart transplant performed in the Valley, sleeps contentedly in her mother’s arms only because of a selfless decision made by the parents of another baby in an unknown state who donated Sienna’s tiny new heart.
“I can just imagine the heartache,” says Sienna’s mother, Stephanie Provencio, holding her sleeping daughter against her chest. She looks away, blinking several times to keep her tears at bay.
Provencio and her husband, Skip Hoagland, of Avondale, have so much to be thankful for.
Sienna is young enough that she won’t remember any of this – not the needles, the breathing tubes, the surgeries. But she’ll have a wicked scar for show-and-tell in kindergarten.
However, her parents will never forget. And they will always marvel at whoever made such a generous decision at such a terrible time in their lives. “Only because of their decision are we able to hold our baby now,” Provencio says.
When doctors said that a heart transplant would be Sienna’s only chance, her parents knew that meant the donor would be a child about Sienna’s age and size. And they knew, as sick as their daughter was, that the tables could have been reversed, with them being asked to kiss their baby a final time and allow her organs to be donated to save other infants.
“What a horrible question to be asked: ‘Will your baby be a donor?’ ” Hoagland says. But they would have said yes.
With Sienna safe in their arms, they imagine what it would have been like for the donor parents. Their baby would have already been through so much. It would seem so cruel to put that child through anything more, even after death.
“To me, it’s a greater sacrifice,” Provencio says.
Sienna’s parents understand that whatever happened to the donor baby would have happened whether Sienna needed a new heart or not. But they still feel bad – and even guilty – on top of their overwhelming gratitude.
Provencio already was an organ donor. Hoagland went online and signed up.
* * * Sienna looks perfectly healthy now, her cheeks pink, her brown eyes watching everything going on around her in the examining room at St. Joseph’s Hospital and Medical Center.
Even with everything she has been through, she smiles at anyone who smiles at her, claps their hands or sings a song. “It’s unbelievable. It’s one of the true miracles of modern medicine,” says Dr. John Nigro, cardiothoracic surgeon and heart-transplant program director at St. Joseph’s.
He led the team of doctors who did Sienna’s transplant. He says it is rewarding to see how well she is doing.
“It’s hard to describe the emotions,” Nigro says, but he can’t take his eyes off her.
* * * Provencio was 16 weeks along in her pregnancy when her doctor discovered that the baby’s heart was pumping at just 50 beats per minute, much slower than the normal rapid flutter of 120 or so. Something was wrong.
While still in the womb, Sienna was diagnosed with cardiomyopathy, meaning the electrical signal between the top and bottom chambers of her heart was blocked.
“We thought the worst from the get-go,” Provencio says. The doctors didn’t offer much hope, either. “It was doom and gloom.” The chances of carrying the baby to term were very low. Doctors put Provencio on steroids and another medication to speed her heart rate in the hopes that the baby’s would speed up, too. Weekly scans showed that Sienna’s heart wasn’t beating faster, but it wasn’t slowing, either. And she continued to grow – just barely, but enough to give her parents hope.
The baby’s best chance to survive would be if Provencio could carry her to at least 34 weeks. Sienna would need a pacemaker, but she could live a relatively normal life.
She was born April 8, at 36 weeks, at Banner Good Samaritan Medical Center, weighing 4 pounds, 13 ounces. Her cry was weak, but the sound was beautiful to her parents. It was the first sign that maybe she would be all right, her mother says. Provencio got to hold Sienna for just minutes before she was whisked away to the intensive-care unit.
Four days later, Sienna was taken by ambulance to Phoenix Children’s Hospital. With her heart still plodding along at just 50 beats a minute, she needed the pacemaker.
Her parents, worried and wide-eyed, signed the paperwork and waited.
“It was horrible,” Provencio says. “She was so fragile, so little.”
Sienna came out of surgery fine, an incision running from the base of her throat almost to her belly button and a breathing tube down her throat. Mom and Dad could only touch her gently around the tubes and wires. Two days later, when the breathing tube came out, they got to hold her. Mom was first.
“It was such a special moment,” Provencio says.
Twenty days later, Sienna was strong enough to go home, with visits every two weeks to monitor her progress. She began to gain weight, and her parents began to relax a little. In August, Sienna went back into surgery for a second pacemaker, this one a little bigger and stronger than the first.
There were frequent visits to the hospital for monitoring. But, for the most part, life with a new baby fell into a pattern, with feedings every four hours, doting grandparents, and big sister Sabrina, 12, being the first to make Sienna smile.
But in September, Sienna’s parents took her to the emergency room at Phoenix Children’s Hospital, where she was admitted to the intensive-care unit.
Listening to her chest, one doctor said: “I’m not hearing it.” The other yelled, “CPR!” and the room was flooded with people in white coats and scrubs. Sienna’s parents watched in horror as a doctor lifted Sienna into his hands like a football, performing chest compressions. Pumping. Pumping. Pumping.
“Don’t stop,” Provencio said over and over again. “Don’t stop.” She was talking to the doctor and her baby. Don’t stop. It took 15 minutes to get Sienna’s heart beating again.
* * * Despite the pacemaker, Sienna’s heart muscle was growing weaker, unable to pump enough blood to support her circulation system.
Her only hope was a heart transplant, doctors told the shocked parents. Even that would be a long shot. The operation is rarely successful in pediatrics, and donor hearts that small are just as rare.
Sienna was transferred that night to St. Joseph’s Hospital, which opened its pediatric heart-transplant program earlier this year. She would be the program’s third transplant.
She was listed on the United Network of Organ Sharing, and the family waited anxiously.
Babies sometimes wait weeks, even months, for a suitable donor organ. And Sienna was getting worse. Doctor inserted a breathing tube and considered putting her on a machine to keep her heart beating.
“Our options were getting less and less,” Hoagland says.
His baby girl had been through so much already. The pacemaker surgeries and recoveries had been tough enough. Now, there were more needles and tubes and surgery.
“There are parents who don’t do it. They take their babies home and enjoy the time they have left,” Hoagland says. He shakes his head: “We always thought we had to do whatever possible.”
Remarkably, just six days later, the hospital got word that a heart was available. And it was a perfect fit.
The operation, which took place in mid-October, took almost six hours. As soon as the new heart was neatly tucked inside Sienna’s chest, she began to get better, the color rushing back into her cheeks.
She was breathing on her own in a day. Susan Park, Sienna’s pediatric nurse practitioner and heart-transplant coordinator at St. Joseph’s, says they all were entranced by the heart monitor above her bed.
“We could see on the screen the blipping of her new heart, her own rhythm,” Park says.
It was like music.
About a month later, Sienna got to go home from the hospital. Just in time for Thanksgiving.
* * * Now, Sienna is up to 12 pounds, 6 ounces. She has a feeding tube that runs through her nose and into her stomach, as she relearns to nurse and drink from a bottle after so much time in the hospital.
One day, she drinks 24 milliliters for her grandfather, a record.
“You’re Grandpa’s sweet pea!” says Keith Hoagland of Peoria, holding up the empty bottle.
“Look at that!” Sienna’s dad exclaims. “Who’s a good baby?”
She still goes to the hospital twice a week for checkups. The visits will lessen over time, but she’ll require a lifetime of special care, including daily medication to prevent organ rejection.
Her parents will never stop worrying, but the longer she goes with no sign of rejection, the better the chances that she won’t. Her new heart will grow with her.
“Yeah, you’re a lot of work,” Hoagland says, sweeping his baby into his arms. Her tummy full, Sienna lays her head against his chest.
Hoagland and Provencio are struggling to write a letter that would be delivered to the family that donated their baby’s heart, but they don’t know how to thank them.
“We are so grateful,” Hoagland says. “We do feel really bad that they had to lose a child, but we are so happy we had this second opportunity with our daughter. We are very grateful and very sad at the same time.”
They all are hoping to meet the family one day and let them meet Sienna.
“The parents who donated their little one, I just want to meet them so bad,” Grandpa Hoagland says. “It’s the greatest thing a person could ever do. A mom and a dad to make that donation – well, what a gift.”
Sienna sleeps in a bassinet next to her parents’ bed. Several times in the night, Provencio reaches out and puts her hand on her daughter’s chest, feeling for the flutter of her baby’s heartbeat against her fingertips.
She dreams about her baby girl’s future. School. A driver’s license. A career. And a family of her own. Her dad wants all that for her, too – and more.
“We just hope she takes this new heart and runs with it,” he says.