Local family meets mother of their son’s heart donor
When Lindsay Gerbracht first felt 2-year-old Easten Engstrom’s heart beating, she felt right at home.
And for the first time since her 7-month-old daughter Lillian Brown passed away, she felt everything would be OK.
Nearly two years ago, Lillian’s heart was donated to Easten for a transplant. Earlier this month, the Engstrom family of Wyanett Township took a trip to Lynchburg, Va., to unite with Gerbracht, the mother of Easten’s heart donor.
“The whole trip was blessed,” Easten’s mother Derri said. “There’s a special bond and connection between our two families.”
In her first letter to Derri, Gerbracht shared her daughter’s story.
Lillian Nicole Brown was born June 29, 2010 to Johnny Brown and Lindsay Gerbracht in what they were told was a normal pregnancy.
When they were about the leave the hospital, the doctor came running up and told them something was wrong: Lillian hadn’t pooped yet!
She had an X-ray, and doctors discovered she had a bowel obstruction. Lillian was transported an hour away to the University of Virginia (UVA) in Charlottesville, Va., where a NICU and PICU were available.
There it was discovered that Lillian had what’s called “ileal atresia,” a looped section of her ilius, the medical term for small intestine. At just 6 days old, Lil had her first surgery on her bowels to remove a small section of her intestine.
The surgeon gave her an ileostomy bag and finally, after 33 days in the hospital, Lindsay and Johnny took their daughter home.
Three weeks later, she was ready for her follow-up surgery to put her bowels back together.
“After the surgery was done, Lil came out with just a scar across her tummy above her belly button,” Gerbracht said. “The surgeon said she did wonderfully. From that point on, Lil began growing and eating and was the biggest joy of my life.”
That joy did not last long.
On Jan. 15, 2011, Gerbracht laid Lillian down for her nap. About 10 minutes later, she heard the loudest scream that had ever come out of Lillian’s mouth. Home alone with Johnny at work, she ran to Lillian and tried calming her, but nothing helped.
Once Johnny got home, they decided Lillian needed to go to the hospital. Her cry had calmed but she was lethargic, barely responsive and pale. They brought her to the ER in Lynchburg, where Gerbracht said the doctors did not know how to treat her. She begged them to get her to Charlottesville.
“You could see the life slipping away from her,” Gerbracht said. “I thought her lungs were being compressed because her belly had gotten so big and the pressure was making it hard for her to breathe.”
When this had happened before, the doctors at UVA put a tube down her throat and suctioned out the pressure, relieving the blockage. The hospital in Lynchburg did not have a tube.
Rather than sending her to UVA, a tube was sent from another local hospital. It took nearly two hours for the tube to get there, and when it arrived, it was the wrong tube.
Finally, a helicopter arrived and Lillian was airlifted on a 19-minute flight to Charlottesville. She coded on the way there. Doctors performed CPR for 35 minutes before they were able to revive her heart.
Unfortunately, by that time, Lillian’s brain had suffered damage due to lack of oxygen. For days, Lillian was on a ventilator and completely unresponsive. An MRI of her brain showed fluid everywhere and nerve damage at every single view.
Over the course of a few days, she stopped being able to hold her own body temperature and they had to put her under a warming blanket. They told Johnny and Lindsay to start thinking about making a decision of taking Lillian off life support.
“There was no way I could do that,” Gerbracht said. “That was my baby, my life—if there was a chance she would wake up, I was going to take it.”
On Jan. 20, the day before Gerbracht’s 28th birthday, Lillian’s pupils blew, and she was pronounced dead.
A woman rushed in and asked if they would donate organs, saying there was a child who was a match for their daughter’s heart.
Her parents almost decided not to donate Lillian’s organs. Gerbracht said Lillian’s father Johnny was distraught and said Lillian had been through enough.
After hours of convincing from Gerbracht, her mother and Johnny’s father, they convinced him of the good that would come from donating.
“The day we got your letter was the day I have been waiting for since Lil passed away,” she wrote in her letter to Derri.
The first letter
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.
On Jan. 21, 2011, at 5 months old, Easten received a heart transplant with the heart of an unknown donor. But it wasn’t until this year that Derri sent her first letter to Gerbracht.
Gerbracht wrote back on March 19, 2012, sharing Lillian’s story and changing both families’ lives forever.
“I have been waiting for your letter for what feels like an eternity,” Gerbracht wrote.
Initially, the two corresponded through the organ donor organization LifeNet Health to protect their identities. It’s rare that organ donor families and recipients correspond, and even more rarely do those families meet in person.
When Gerbracht didn’t want to go through the organization anymore, she put her contact information on one of her letters. But because of liability, the organization blocked it out.
However, Easten’s father Nick put some bleach on it and was able to uncover her contact information.
That’s when Derri emailed Gerbracht for the first time.
“Is this Lillian’s mommy?” she wrote. “This is Easten’s mommy.”
“I’ll never forget how I felt,” Gerbracht said.
Derri wanted to meet the family immediately.
Since Lillian’s passing, Gerbracht said she and Lillian’s father Johnny haven’t had much contact.
“Losing her has not been easy, and neither of us have been quite the same since we lost her,” she said.
Gerbracht said Lillian’s father wasn’t ready to meet the Engstroms. She told Derri they’d have to wait, but then decided she wanted to move forward with a meeting herself.
Hearing the heart
“It was the most amazing, incredible, from start to finish, weekend I’ve had my entire life,” Gerbracht said of the Engstrom’s visit earlier this month.
When Easten, his older brother Deven and their parents Derri and Nick arrived, they met Gerbracht in the hotel lobby, where Easten gave her hugs and kisses. Gerbracht reached up and put her hand on Easten’s chest, then listened through a stethoscope. Hearing his heart beat for the first time, she started to cry.
“I remember thinking, ‘that’s exactly what it sounded like in Lil’s ultrasound,’” she said. “I burst into tears and thought, ‘this little heart grew in my belly.’”
Derri and Gerbracht agree: the two mothers share a bond and feel like family. Gerbracht said she bought a plane ticket to spend Thanksgiving with the Engstroms in Minnesota because “it was only fitting to be with my family on Thanksgiving.”
“We felt this incredible loving bond between these two mothers of these babies,” Derri said. “We feel like sisters. I prayed and thought about her before Easten got the transplant because I knew there was this mother who was going to lose her baby.”
In Virginia, the Engstroms visited Lillian’s grave site with Gerbracht. Easten touched her headstone and they laid out roses in the shape of a heart.
“I think Easten understands,” Derri said. “There’s this unknown connection between these two babies. When he sees Lillian’s pictures, he stops and stares, kissing her pictures. He’s obsessed with looking at the videos and pictures we have of her and Lindsay.”
Gerbracht shares her birthday with the day Easten received Lillian’s heart. She still mourns Lillian on Jan. 21, but now she feels she has a day she can celebrate because she feels Easten got to have a second chance at life on her birthday.
One time on their trip, they were at lunch and Easten was sitting on Gerbracht’s lap. She had her arm around him and her hand was resting on his chest. She could feel his heart beating.
“It made me feel so at home and alive and happy,” she said. “There’s a reason for all this madness. For the first time I felt OK. This has brought me so much healing.”
‘It’s a happy ending’
Gerbracht said she’s thankful the Engstroms are now in her life, and she’s been happier than she has been since Lillian passed away.
“I’m so thankful for them and they’re so thankful for me, and we’re truly like family now. It’s the beginning of a beautiful lifelong relationship,” she said.
Derri said she believes Lillian’s heart was a perfect match for Easten and she prays he’ll never need another heart transplant. This Thanksgiving, Gerbracht is happy she’ll be with Easten, Deven, Nick and Derri.
“I’m so thankful for second chances at happiness and fulfillment in life. There was a time I didn’t think I would be OK, and I’m so thankful God brought them to me because this has healed me and healed my heart. I’m so thankful it didn’t end with Lil. I’m thankful that Easten can grow and be happy and healthy,” Gerbracht said. “It’s a happy ending. It couldn’t have turned out any better.”
For the original story on Easten Engstrom’s heart transplant, visit www.isanticountynews.com/2011/06/15/a-miracle-for-monster.