By Elizabeth Sias
Derri Engstrom wraps her 10-month-old son Easten in her arms, holding him close. His father Nick and brother Deven sit nearby, warm smiles on their faces as they watch.
When Easten curls his mouth into his infectious smile, all three beam.
“Grrrr!” Easten suddenly exclaims, and 9-year-old Deven replies with a growl of his own.
“His nickname at home is Monster,” Derri explains, smiling and laughing with her boys.
Simple moments such as this one are something the Engstroms were not accustomed to for the first six months of Easten’s life. Born Aug. 10 with a heart defect, Easten had no choice but to undergo open heart surgery at just six days old.
With a condition known as hypoplastic left heart syndrome, the left side of Easten’s heart was underdeveloped. Only the right side was pumping blood.
“He essentially had just half a heart,” Derri said.
‘He almost died in my arms’
It was 20 weeks into her pregnancy when an ultrasound technician noticed something wrong with the baby’s heart and asked Derri to return for a level two ultrasound.
That’s when doctors discovered Easten’s heart defect and told the Engstroms he would have to undergo surgery.
“The doctor left to look at everything and when she came back, she told Nick and I that from one out of ten, with ten being the worst, that this was a ten — this heart condition was one of the worst heart conditions you could have,” Derri said. “We were devastated.”
Doctors told the family their baby would have to undergo three surgeries: one between three to six days old, one at three to six months and another at a year-and-a-half.
During Easten’s first surgery at Children’s Hospital in Minneapolis, doctors placed a shunt in his heart to help circulate blood. After three weeks in the hospital, the Engstroms, exhausted but relieved, were able to bring their son back home to Wyanett Township for the first time for what they thought would be months.
But after just six hours at home, Easten began crying and wouldn’t stop. Doctors had informed the parents that, with this type of heart condition, Easten couldn’t cry for long periods because his heart wouldn’t be able to handle it.
“He almost died in my arms,” Derri recalled, tears filling her eyes.
They drove to the emergency room at Cambridge Medical Center, where doctors were able to stabilize Easten before flying him back to Children’s Hospital, where they found out his heart function was so poor that he couldn’t go on with the surgeries.
“He had a very sick, very weak functioning heart,” Derri said.
His only option was transplant.
A tough road
For four months, the Engstroms lived in the Minneapolis Children’s Hospital while doctors and nurses, with the help of IVs, kept Easten in stable condition.
But he wasn’t always stable, which is why Easten couldn’t be placed on the waiting list right away.
“It was a tough road,” Derri said.
After a couple weeks, Easten suffered a seizure. More time passed, and he had a blood infection.
When Easten was placed on the list to receive a heart, the Engstrom’s were introduced to Easten’s cardiologist Dr. Rebecca Ameduri and the rest of the team at University of Minnesota Amplatz Children’s Hospital, where they lived for another two months while they waited.
The biggest setback on his road to transplant, however, came on Christmas Eve.
Easten started screaming, Derri recalled. She and Nick were terrified because he wouldn’t stop. There was something wrong with his stomach, and at first doctors thought he was simply constipated.
But when he went into cardiac arrest, the hospital’s intensive care unit took Easten to be incubated and sedated.
“That was the sickest and weakest he had been,” Derri said. “His heart function was so bad.”
Through some tests, doctors discovered Easten had appendicitis, which they told the Engstroms is rare among infants.
With an infection and his immune system suppressed, Easten wouldn’t be able to accept a donor’s heart until he was again stable.
On a healthy baby, doctors had said, they would have drained the infection and waited six to eight weeks to go in and remove the appendix surgically. With Easten’s poor heart function, doctors had to immediately perform surgery to remove the infection.
Fortunately, the surgery was a success and there were no complications.
And then the Engstroms continued to wait.
If Easten still had an infection when a heart arrived, they would have to turn down the heart.
Just after the new year, Dr. Ameduri came to Nick and Derri to give them the news: a heart was found.
“It was perfect timing,” Nick said. “She said if it had been the day before, she wouldn’t have accepted it.”
Easten was taken into surgery at Amplatz Children’s Hospital at noon.
Derri, Nick and Deven anxiously awaited for news of the outcome. Minutes turned to hours. Time seemed to freeze.
“We were on pins and needles waiting,” Derri recalled.
Then, at 2 a.m., Easten was wheeled back up with a healthy new heart beating inside his chest. The doctors told them the heart didn’t need any help to get started.
“There he was, pink as could be — he had kind of a bluish purple, dusky grey look before — but he came back up and he was pink, with pink lips and pink fingertips,” Derri said, laughing at the memory.
Will and determination
Easten’s new heart has given him a new start to life, but the Engstroms keep a watchful eye on their son at all times.
Derri monitors Easten’s vitals and tracks his weight twice a day — any drastic changes could be the first signs of rejection.
He also has a feeding tube for his medication, which includes immunosuppressants to prevent his body from rejecting the foreign organ, anti-viral and anti-bacterial medications to compensate for his suppressed immune system, and many more.
Doctors warned them the workload would be similar to a full-time job to manage their child and watch for signs of rejection.
According to Easten’s cardiologist Dr. Ameduri, infants tend to heal more quickly after transplants, however there is a risk that they will require a second transplant as they grow up. Fortunately, research indicates babies who avoid initial complications are likely to go more than 20 years without requiring another transplant.
“Really this is kind of a new leaf for him,” Dr. Ameduri said. “We hope that he’s going to have a long life ahead of him.”
Easten’s operation was the first of only two heart transplants performed on a baby less than a year old in Minnesota so far this year, and one of just 17 since the United Network for Organ Sharing began tracking the numbers in 1988.
Easten’s recovery from transplant to home was just 10 days, the quickest at the University of Minnesota, which Derri says was one of the first aspects of his personality shining through.
“He’s a very strong willed little guy,” she said. “When he means business, he means business, and that’s kept him alive. Without his will and determination, he would have never made it.”
A year old
Deven holds his little brother beneath his arms and shakes his own head back and forth, growling.
This time, it’s Monster who responds in turn.
“Grrrr!” Easten playfully growls at his brother, who plants a kiss on Easten’s cheek.
Although they continue living day by day, Derri and Nick say their son’s ordeal has put everything in perspective.
“At least right now we have a future and the future wasn’t very bright before,” Derri says.
With Easten’s first birthday on Aug. 10, the Engstrom’s are planning to hold a large celebration of his life.
“Yes, you’re turning one, aren’t you?” Derri coos at her youngest son. He grins and laughs.
“Now we’re just enjoying our time with Monster,” Derri says. “We have this beautiful little angel.”