A Heart for Brooke
Mukilteo dad John Naab got the best gift he could imagine on his 50th birthday: his daughter Brooke turned 1.
“She’s worked hard to get here,” said Naab, just a few days shy of Feb. 11, their shared birthday. “I can’t think of anything I could want more than to share this day with her.”
There was a time when Naab and his wife, Rebekah, weren’t sure that Brooke-ee, as they call their smiling cherub of a girl, would blow out her first candle. Or, if she did, whether she would be celebrating from a bed in the intensive care unit at Seattle Children’s Hospital.
Brooke was only a week old when she was diagnosed with a rare condition that left her heart unable to pump enough blood through her body. But thanks to a skilled team of nurses and doctors at Seattle Children’s, Brooke’s life was saved with a heart transplant. In fact, she was one of four children to receive a cardiac transplant during a record-setting week at the hospital.
But her family endured nearly a year of sleepless night and gut-clenching surgeries to get there.
An Anxious Wait
At first, Brooke’s health troubles appeared to be nothing more than a common case of jaundice, and doctors sent her home after delivery with light therapy equipment intended to give her a rosier hue.
Luckily, an alert nurse, Diane Ford, noticed the baby’s breathing wasn’t right when she visited the Naabs to pick up the light equipment. Ford urged them to go to the nearest Seattle Children’s clinic immediately.
“Had she recommended that we wait until our checkup, Brooke would probably not be alive,” says Naab.
Soon after, Brooke had her first open heart surgery. Before she could have a second surgery to further correct her heart, her left ventricle started to fail. Brooke’s only option was a transplant, and at 4 months old, she was placed on a waiting list. Her life was still in jeopardy, so she spent most of her first year at Children’s, where medical staff worked continually to keep her stable enough to receive an organ as soon as it arrived.
“We were told at one point that Brooke was perhaps the sickest baby in the hospital,” said Rebekah Naab.
Some days, it wasn’t clear that she would make it.
At one point, the doctors were forced to intubate Brooke and put her on a breathing machine in order to ensure her body received enough oxygen. Her parents were warned that she might not survive the procedure. One of the most serious risks was that her heart would speed up, beating out of control.
The doctors began the procedure, but Brooke was stressed by it.
So Dr. Mithya Lewis-Newby started singing “Take Me Out to the Ball Game” to calm the terrified baby. Other medical staff and her parents soon joined. The baseball anthem accomplished what drugs and fancy equipment could not.
The doctor “knew that I sang this song to Brooke every night and that it would get her heart rate low enough to be successful,” John Naab said. “They knew her so well.”
Throughout her long hospitalizations, Brooke remained social and curious, smiling easily and often. But even a bowel movement or changing her diaper taxed her tiny heart. Simple developmental milestones like cutting teeth required staff and her family to keep her comfortable and calm.
Five Days, Four Hearts, One Seattle Children’s Record
In September of last year, four families – including the Naabs – received the news they had hoped and prayed for.
On Sept. 21, the Children’s cardiac team was alerted that a heart was available for 6-month-old Antonio Jesus (A.J.) Baird, and they jumped into action.
The transplant team was no sooner done with A.J.’s successful surgery when their pagers buzzed again. They had a donor for 14-year-old Batul Al-Salami, a Lynnwood teen, whose heart had been failing since birth.
Another page announced a heart for 4-month-old Hannah Campbell.
And finally, on Sept. 26, the call came for 7-month-old Brooke Naab. She, too, would be getting a heart.
Five days, four heart transplants – more than the cardiac team’s two surgeons and four cardiologists had ever done in such a short time. More than most pediatric cardiology departments nationwide have ever done in a week.
In 2012, Seattle Children’s did 56 organ transplant surgeries, 16 of them heart transplants. The hospital has a 92 percent survival rate in the first year after a heart transplant. At least 70 percent of the babies and children who successfully receive a heart transplant will live five or more years.
Those numbers keep rising as medical breakthroughs reshape the medical team’s ability to keep children stable while waiting for an organ and their skill in keeping organs ready for transplant.
Ten years ago, for example, the donor and infant recipient in an organ transplant needed to have the same blood type, among other matching factors. Since then, doctors have learned that due to an infant’s immature immune system, cross-type donations are possible – and less likely to lead to rejection. This discovery, and the increase in the potential donor pool, have been lifesavers.
Still, the cardiac unit has four to six children on the heart waiting list at any given time.
That all of them might get a heart in the same week was astonishing.
“It was almost disbelief as each additional heart offer came in,” said Dr. Lester Permut, the surgical director of the Seattle Children’s Heart Center. “Exhilarating is a pretty accurate description.
“A number of those patients were very ill,” he said. “They were children we were having some worries about surviving to get the transplants. It is a kudo to the cardiologists that they were able to keep them going until a heart became available.”
The Finely Tuned Machine
The cardiologists aren’t the only ones to thank. Transplant coordinators must time every move down to the minute, from notifying waiting families to getting the surgical team from the hospital where the donor heart waits back to Children’s. There, the operating room, the nurses, the pharmacy staff and social workers on the cardiac team must be prepped to go. It can take between 10 and 48 hours to arrange the details of a single transplant, time in which the donor heart is kept stable in the body of the donor.
Transplant coordinators on both ends of the exchange are scrambling: For the best outcomes, the heart must leave the body of the donor and be re-infused with blood in the recipient in less than six hours.
“It’s a well-oiled machine,” said Permut.
“There are a lot of factors involved, from distance between hospitals, location of waiting recipient, amount of organs being donated, availability of operating rooms, etc.,” said nurse Pam Hopkins, Seattle Children’s transplant coordinator.
What gets Hopkins through grueling workdays that can stretch 24 hours without sleep? The families.
“Telling the parents of the child waiting, or even the patient themselves in the case of older children, is the best part,” Hopkins said. “Words really can’t describe that feeling. It is something that you never forget, no matter how many transplants you do.”
John Naab was overwhelmed when he got the news.
“My emotions were mixed and my heart was racing. I knew that someone had lost a loved one, and I was sad over this. I also knew that Brooke was to go through another complex bypass surgery and I might not see her again,” he said. “There were feelings of excitement knowing that her suffering could end and she would have a chance at a quality life.
“I was so filled with nervous energy,” he said, “that when I arrived at the hospital, I darted to the hospital store and purchased a Seattle Children’s Hospital T-shirt. What was I thinking?!”
A Smile and a Wave
The night before her surgery, Brooke had her best night of sleep ever.
Her parents slept very little. They prayed, both for Brooke and for the family of the young donor whose heart she would receive. As their daughter was prepped for surgery, the Naabs found strength in their faith.
“We felt in our hearts that God had gotten her this far, that He was going to come through for Brooke,” Rebekah Naab said. The couple drew support from their daughter as well.
“We were a little nervous when Brooke was wheeled away. However, just before the moment where we would no longer have her in our sights, Brooke waved and smiled at us,” John Naab recalled. “I had never seen her wave before that moment. She made us feel everything was going to be OK. We found our strength in Brooke.”
Five hours later, John and Rebekah Naab looked in amazement at their baby’s heart monitor. For months her heart rate had been too high and oxygen levels too low. Suddenly, they were normal.
The next day, their baby woke up and smiled.
Something to Be Thankful For
All four of the children who received new hearts in the ebbing days of September were home as the winter holidays arrived, but not without a little drama.
Following her surgery, Brooke’s skin color warmed from a pale blue to a beautiful pink. She was suddenly active, kicking and playing in her bed.
But just as the doctors began planning for her release, Brooke’s central line, an intravenous catheter inserted at the jugular vein to allow medication to be delivered continuously, was contaminated. She became sick and showed signs of minor rejection. Happily, the transplant team was able to nurse Brooke back to health.
Such moments remind parents that a new heart is not a final cure.
The longest an infant heart recipient has lived is 20 years after surgery. That means it is likely that all of these children will have to undergo a second transplant at some point, and that they can expect a lifetime of medication and follow up.
Brooke went home on the day before Thanksgiving. She herself was no bigger than a Butterball, but active, alert and playful.
While she was waiting for her heart, hospital staff instructed Brooke’s parents in how they would need to care for and feed her post transplant. Without the energy to eat, Brooke had lost the sensory signals needed to do so. She would have to eat through a tube while she learned to suck and swallow. Her parents would need to give her drugs and clean her medical equipment. Brooke would be under a sort of “house arrest,” going out only to medical appointments for some time.
While her long hospitalization and continued care affected everyone in the family – which includes brothers Ray Naab, 22, Zander Clouse, 18, and Jayden Naab, 9, – everyone is eager to help Brooke make up for the play and development time lost during her long journey to a new heart.
“I play a lot with her and I help with the feeding,” said a proud Jayden, pointing across the family living room to an apparatus attached to an IV pole. Months after returning home, Brooke’s eyes still light up whenever any of her brothers enters the room.
The Naabs continue updating their journal on CaringBridge.org, a resource that allows families to share the experience of a family member in need.
In early December, Brooke was able to sit up on her own. By January, there were no further signs of rejection. By early February, she was weaned off all pain medications, getting some foods from a sippy cup; she learned to crawl backwards and said “Elmo” while watching Sesame Street. Weeks later, she began eating solid foods.
“She’s just so happy all the time,” John Naab wrote to the more than 1,000 people who have been following Brooke’s progress on CaringBridge.
Permut and cardiologist Erin Albers said that while giving a child a second chance at life is part of the reward for their long hours and exacting work, they’re also inspired by the families that surround those children.
“The Naabs are really incredible people,” said Albers. “They are so incredibly positive and have been that way from day one.”
Both doctors said that it’s impossible not to feel emotionally connected to the kids and parents they serve. That connection deepened, said Permut, once he had his own two daughters, ages 14 and 19. Albers, too, said having her own children connected her more intimately with her work.
“I think about them a lot,” Permut said of his children. “There’s no question that once I had my first, my interaction with families changed. It’s the difference between sympathy and empathy, when you can really start to ask: ‘What would I feel like if I were going through this with my child?’
“Ultimately,” he said, “it takes a little more of an emotional toll.”
For that toll, the Naabs have bestowed new titles on Permut and the entire cardiac team: Heroes.
“Brooke is alive today because of the care she received,” John Naab said.
While they rejoice in every developmental milestone their daughter achieves, another set of heroes is never far from their minds.
“When we get our heads above water, we will write the donor family,” John Naab said. “We often think about and pray for them. Our daughter’s suffering ended because of their courage.”
Waiting for Mitchell’s Heart
Seattle 6-year-old Mitchell Smith is a charmer. He's a headstrong, determined little boy who loves music and dancing and hates to be poked by needles.
He also needs a new heart.
Diagnosed with Hypoplastic Left Heart Syndrome soon after his birth, Mitchell has been waiting for a transplant at Seattle Children's Hospital for nearly two years.
Read more about the transplant waiting game and how one parent and child cope on Seattle's Child's website.