On July 10, 2018, Avery Crawford entered the world – a beautiful and seemingly perfect baby girl. Little did anyone know about the battle that was secretly raging in her tiny body as her heart struggled to do its job.
Avery was a miracle to her parents, Elaine and Jordan Crawford. Their 7-year-old son, Quincy, had always wanted a little brother or sister, but doctors said it wasn’t possible. Years went by and they began to lose hope. Then one day, out of the blue, their dream came true. Elaine was pregnant.
“She was a gift,” said Elaine.
Every ultrasound had been normal leading up to Avery’s delivery, and so the Crawfords had no reason to expect anything would be amiss with their baby. After she was born, her tests were still clear, and so she was discharged to go home. They were excited to embrace their new normal as a family of four. But things were not what they seemed. After a few weeks went by, Avery’s heart suddenly couldn’t keep up appearances anymore.
Their family’s new normal shattered completely.
An unexpected discovery
Avery stopped eating, began vomiting and then started struggling to breathe. Elaine immediately called their doctor and they rushed to the emergency room near their home in Tacoma. By the time they reached the hospital, Avery was blue. Elaine took her daughter in her arms and ran into the emergency room yelling, “She’s not breathing.” Within minutes, they were swarmed by medical staff.
Avery was diagnosed with dilated cardiomyopathy, a disease of the heart muscle wall. Cardiomyopathy reduces the heart’s ability to pump blood effectively throughout the body and can lead to congestive heart failure. Her situation was dire, and so she was transferred to Seattle Children’s.
Seattle Children’s Heart Center is one of the best pediatric cardiology programs in the U.S., and the top-ranked program in the Northwest, according to U.S. News & World Report. With more than 40 pediatric cardiologists, Seattle Children’s has experience diagnosing and treating every kind of heart problem.
A medical home
At Seattle Children’s, the Heart Center team evaluated Avery and determined her condition couldn’t be controlled using medications or other assistance devices. They had hoped medications would help, but it was clear she wasn’t going to improve. She needed a new heart.
“When a child has really bad heart failure, we have three options,” said Dr. Michael McMullan, division chief of congenital cardiac surgery at Seattle Children’s. “We can either try to help the heart pump blood more effectively or we can reduce the body’s demands on the malfunctioning heart until it can be replaced. Avery’s heart was maxed out. Her heart function was only going to continue to get worse. Our only option at that point was a transplant.”
In August 2018, she was listed for transplant.
Her condition worsened with each passing day, and so the Heart Center team decided to sedate her to reduce the stress on her heart.
They were worried any stimuli could increase her heart rate and cause heart failure.
“She was on borrowed time,” said McMullan. “No question, without a transplant, she was going to die. Avery was on the edge. Any stimulus could have caused her heart to stop.”
For eight weeks, she laid in her hospital bed quiet and still, waiting for a heart.
“She was so ill at the end,” said Elaine. “Every day she got weaker and paler.”
But they never lost hope. Someone was always at Avery’s bedside.
“We wanted someone to always be there to hold her hand,” said Elaine.
They also practiced gratitude. Every day, they tried to be thankful for something. Elaine even asked her friends and family to take photos of themselves holding signs of gratitude and inspiration. She placed the photos on the sliding glass door of Avery’s hospital room to thank the doctors and nurses of the Cardiac Intensive Care Unit (CICU).
One inspirational quote stuck in Elaine’s mind as they waited, hopeful for a miracle:
“Here’s what I’ve learned about miracles: Sometimes they turn up quick, and sometimes they take their sweet time getting to you. It’s hard to tell either way because a miracle never looks exactly the way you think it should. Some miracles are big and flashy, and others are sweet and simple. Some miracles make you want to shout, and others make you want to sing.
And some miracles, the very best miracles of all, show up wearing cowboy boots.”
― Natalie Lloyd, A Snicker of Magic
The best news
On Oct. 16, 2018, one of Avery’s cardiologists walked into their room.
“Would you like to hear some good news?” said Dr. Erin Albers.
“How good is the news?” replied Elaine.
“The best news ever,” Albers said. “We have a heart.”
Elaine immediately broke down. She fell into her father’s arms and sobbed.
Her daughter would get a new heart the next day, and a second chance at life.
A new heart, a second chance
The night before the transplant was one of the longest of Elaine’s life.
“It was like trying to sleep on Christmas Eve,” said Elaine. “I knew in the morning, we’d get the best gift of our lives. It was the greatest joy, mixed with the highest anxiety and fear.”
Avery made it through the night, and Elaine could finally sigh in relief. It was like a weight had physically been lifted off her shoulders.
That morning, Elaine called the school where she worked to deliver the good news. Elaine has been a teacher for 21 years and is currently a librarian at a school in Tacoma. The entire school had been excited to welcome Avery to the world, and just like Elaine, they’d been waiting on pins and needles hoping Avery would get a new heart.
“The school literally erupted in a cheer when they heard she got her heart,” said Elaine. “Their support meant the world to me.”
When the doctors came into their hospital room to take Avery into surgery, Elaine said a calm came over her.
“It felt good letting her go,” said Elaine. “When she went into the operating room, she was with her family, our doctors and nurses, and I knew she was coming back alive.”
Her miracle had come, and it did indeed show up as the quote had predicted. McMullan arrived for the surgery wearing cowboy boots.
“I couldn’t believe my eyes,” said Elaine.
Hours later, Avery had a new heart beating in her tiny chest.
“It’s hard to put into words the gratitude we feel,” said Elaine. “I wanted this child for so long. To have her so near death, and then to have her be reborn again – it’s overwhelming.”
Road to recovery
Avery’s recovery after transplant was filled with ups and downs. Due to her condition, she had breathing issues and needed assistance.
“We’d take two steps forward, and then two steps back,” said Elaine. “We kept asking, ‘How much longer will it take for her to be well?’”
The hospital became a second home for their family. Every night, Elaine or Jordan stayed by her side and continued to hold onto every positive step forward, no matter how small.
“Avery will never remember this, but I’ll always remember the smells and the sounds of the hospital,” said Elaine.
The beeping of the monitor, the bubbling of the breathing machine and the smell of the hand sanitizer are details she will never forget. But most of all, she will never forget the people they met in the hospital, and the compassionate nurses and doctors who saved their daughter’s life.
“They will always be family,” she said.
On Dec. 23, Avery and her family were discharged from the hospital. They were finally headed home.
Her older brother was over-the-moon his little sister was finally home again. Elaine said their bond is the best medicine.
“They are so in love with each other,” said Elaine.
Elaine is taking the rest of the school year off to care for her daughter.
“It’s a full-time job,” said Elaine. “Being a new mom is a lot of work. Adding another layer of caring for a medically fragile child is even harder, but also so rewarding.”
To other families in the hospital still waiting for a transplant, Elaine says to take it one day at a time.
“It’s a marathon,” she said. “In the midst of the scariness, there are moments of joy. Try to find those small moments amid the long days and hold onto them.”
Looking forward to the future
Today, Avery is 9 months old and thriving. Every day, she continues to grow and delight her family with her sunny disposition.
“She’s filled with joy,” said Elaine. “Every morning, she wakes up grinning ear-to-ear. It’s like she has a real appreciation for life.”
They are already looking forward to her first birthday, but Elaine says Avery now has two birthdays to celebrate – the day she was born, and the day she was reborn. She hopes to invite Avery’s care team to celebrate with them. And just maybe, Avery will wear her cowboy boots to honor McMullan.
“He’s a hero to us,” said Elaine. “Every time I see him I get star-struck.”
A gift of life
Elaine said that one of the most important realizations from Avery’s journey was the incredible impact of organ donors who choose to pass on the gift of life. This is also a lesson that resonated with her entire school. All the teachers and students – more than 650 of them – pledged to become organ donors.
To the family who saved their daughter’s life, it’s hard to put into words just how thankful they are.
“In the midst of immense pain and grief, they chose to gift part of their child to ours, so she could be reborn,” said Elaine. “We’re so eternally grateful. They allowed our daughter to live and thrive and grow up. It’s a gift so big, I don’t think the enormity has quite hit me yet.”
Elaine said she often thinks about the mother of that child.
“She was so brave,” said Elaine. “She was able to look beyond her loss and give the gift of life. I like to think that Avery now has two moms. She has me, her biological mom, but she also has a heart mom somewhere out there in the world. I’d love for her to see Avery one day. For her to see her sparkle and her joy for life. To know, her child gave Avery another chance. I know Avery is going to do something amazing one day, and it’s all because of that gracious, selfless act.”