Heart transplant recipient is a mere four months old

By Lynn R. Parks

On January 5, Jamie Everton took what seemed to her to be the longest walk of her life. In terms of distance, it wasn't that far  just the length of a hospital corridor. And her load, her eight-pound daughter, wasn't heavy.

But at the end of the walk was an operating room in the Alfred I. duPont Hospital for Children near Wilmington. And little Ellie, just four months old, was headed into that room, where she was to undergo a heart transplant.

"That walk was really overwhelming," said Jamie, who lives in Seaford with her husband, Michael, and their two other children, Reid, 7, and Mara, 4. "I knew that this surgery was extremely invasive and she was facing a huge risk. It was a very difficult thing to do."

That was just over five weeks ago. Today, Ellie's new heart is functioning well. Doctors are trying to regulate medicine that she will have to take the rest of her life to prevent her body from rejecting what it sees as a foreign organ. When that is accomplished, Ellie, who has been in the hospital since the day after Thanksgiving, will get to go home.

"I will meet with the transplant team [today] to discuss what the next step is," Jamie wrote Monday on a blog that she keeps about Ellie's experiences. "I am catching a whiff of the word HOME  but trying to not get so EXCITED!! Whoops  TOO LATE!"

Everything was fine

Ellie Willow-Rose Everton was born Sept. 9, 2010. "Everything was fine during the pregnancy; the sonogram showed that everything was fine," said Jamie, who is an accountant with Progar and Co. in Lewes.

Similarly, all was good after Ellie's birth. "We took her home and she was a happy baby," Jamie said. "I took her to work with me, to the gym, all over the place. If only I'd known what was really going on."

In November, Ellie developed what Jamie thought was a cold. When her symptoms didn't get any better, Jamie took her to the doctor. After a chest x-ray, the baby was diagnosed with pneumonia.

"She was treated, but still she didn't seem to be getting better," Jamie said. And Ellie was still very small. Since birth, she had not gained any weight.

By Thanksgiving, Ellie was very pale and had no appetite. The next day, at 9 in the morning, her parents took her to the emergency room at Nanticoke Memorial Hospital in Seaford.

"After a series of tests and examinations, at 5 p.m. she was successfully diagnosed with an enlarged heart," Jamie said. Ellie was stabilized "as much as they could" at Nanticoke and by paramedics with a medical transport helicopter that arrived at the hospital at 7:30 p.m. An hour and a half later, the baby and her mother took off in the helicopter for the duPont Hospital for Children. They arrived at the hospital at about 9:35 p.m.

'We couldn't process any more'

Once there, Ellie was immediately whisked off to a treatment room. Michael, who had driven to the hospital, and Jamie were allowed to wait in a family suite associated with the hospital's cardiac care unit. Finally, at around 1 o'clock Saturday morning, a doctor came in to tell them that the medical team had been working to save Ellie's life.

"He told us that all her scores were off the charts," Jamie said. "He said that Ellie had been barely living when she got here. And he used the words 'resuscitation' and 'transplant.' "

Jamie and Michael were shocked. "I had known to be worried, but I had no idea that she was in such trouble," Jamie said. "It had never occurred to us that she was dying. We were crushed. How do you respond to something like that? Finally, I had to tell the doctor to stop talking, that we couldn't process any more."

When Michael and Jamie next saw their daughter, she was on life support. She was hooked up to a ventilator and "had IVs coming out of every limb," Jamie said.

She had also been given medicine to paralyze her from the waist down, so that she wouldn't move and disturb the intravenous connections. "She was still very small," Jamie said. "And now I understand that she hadn't had the energy to eat. Her body was doing all it could do to keep going and it didn't have the resources for her to eat."

Ellie's diagnosis was dilated cardiomyopathy, a condition in which the heart becomes weakened and enlarged and cannot pump blood efficiently. Her only hope, the doctors said, was a heart transplant. Six days after her arrival at the hospital, she was put on the heart transplant list with a status of 1A, the most urgent status.

The longest walk

Jamie and Ellie settled in for a long stay. While Ellie remained in the cardiac intensive care unit, Jamie stayed in the hospital in the family suite as well as at the Ronald McDonald House near the hospital. Michael drove back and forth between the hospital and Seaford, taking care of Reid and Mara and tending to his business, MRE Construction.

Michael's parents, Michael Sr. and Rosemary, who live across the street from their son and his family, were huge helps with the children, Jamie said. And her parents, Scott and Emily Heishman, Lincoln, stayed in the hospital with Ellie on Christmas so that Jamie could go home for the day.

"This whole thing has been really hard on all of us," said Jamie. "We have been trying to keep things as normal as possible." On Dec. 30, the doctor reluctantly allowed Ellie to leave the ICU to stay with her mother in the family suite. She still had a feeding tube and was hooked up to machines that monitored her around the clock. Even so, "that was a nice time, I'll tell you that," Jamie said.

Early on the morning of January 5, the hospital was notified that a possible heart had been located for Ellie. The heart was from a baby boy and was located in New York.

At 2:30 that morning, the hospital got confirmation that the heart could be Ellie's. But doctors from the hospital still had to travel to New York, to inspect the heart and to verify that it was in good enough condition for transplant.

Ellie too had to undergo a lot of tests that day, to make sure that she was healthy enough for surgery. But finally, at 2 in the afternoon, the transplant coordinator came to the suite to tell Jamie and Michael that everything had worked out. "It was a go," Jamie said. Shortly after that was when Jamie and Ellie set out on what Jamie describes as "the longest walk of my life."

"They let me carry her to the OR," she said. "It was the first time in a long time that I had been able to carry her. I think it was good, for her and for me. But it was hard. I still get emotional just thinking about it."

Ellie went into surgery at around 3:30 p.m. The transplant, only the eighth that has been done at A. I. DuPont Hospital for Children, was completed about six hours later. The surgeon was Dr. Christian Pizarro. "Ellie did really well," Jamie said. "And her recuperation has been quite stellar. Her heart is functioning very well."

Much to be grateful for

Jamie is looking forward to the day that she and Ellie are back in Seaford "and we are all home together as a family," she said. Even after she comes home, Ellie will still be on numerous medicines. And because her anti-rejection drugs inhibit her body's natural immune defense system, it will be very important for her parents to keep their home "as germ-free as possible," Jamie added.

"It will be different from what life was before," Jamie said. "But I do envision a near-normal, a welcome normal. We will all be together in the same house."

Jamie, who attends Cannon United Methodist Church and also supports St. John's United Methodist Church, said that after all her family has been through, she still feels very grateful for their current situation.

"Ellie was only on the transplant list for 34 days," she said. "The heart was a perfect match for her. New York, the home of the child whose heart was donated, is not even in the same region as Delaware, so we were lucky that no one in that region needed it."

As for the parents of the baby whose heart Ellie now has, Jamie plans to contact them to tell them how thankful she is. She will be able to do so in six months, and only through the Gift of Life organization in Philadelphia, which oversees organ transplants in the region.

"The prognosis is that Ellie will be able to lead a normal life," Jamie said. "She will always be on immuno-suppressants and she will always have to watch out for infections. "But we will get there. We have to. Ellie is well-worth everything that we've been through."

For your information

Jamie and Michael Everton have insurance that will cover their daughter's hospital expenses. But Jamie is not sure what costs will and won't be paid. "I haven't seen the big bill yet," she said.

A fundraiser for the family will be held Monday, Feb. 21, from 4 to 8 p.m. at Pizza King in Seaford. Coupons for the fundraiser are available from Jody Bee, Seaford, who is organizing the event. For details, e-mail her at beejr@verizon.net. To follow Ellie's progress, visit the website www.caringbridge.org/visit/ellieeverton.

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