Rylie Weigel

Photo courtesy of the Weigel family

Two days after Rylie Weigel's birth Oct. 29, 2002, Mayo Clinic doctors diagnosed her with hypoplastic left heart syndrome (HLHS), a severely underdeveloped left-sided pumping chamber of the heart, which normally supplies blood flow to the body.

Her family was given three options to treat her condition. The first was to undergo Norwood surgery, one of three operations for treatment of HLHS, which was a risky operation for Rylie given her extreme form of HLHS. The second option was heart transplantation, which is uncommon at such a young age. The final option was to take Rylie home and let nature take its course, which would give her only a month to live.

A day later, the Weigels made their decision — they opted for heart transplantation. But it was a hard decision for them to make.

"There were so many emotions, it is hard to explain," Tara says. "We were very scared, but we were glad we were at Mayo. Every doctor we worked with was awesome. If we had a question that they didn't know, they'd get us an answer the same day."

A hard start to life

Rylie's story begins twelve hours after she was born in Thief River Falls, Minn. She started turning blue in the face and had difficulty breathing. Twenty-four hours later, she was transported by ambulance to Altru Clinic in Grand Forks, N.D.

After arriving, she was referred to Mayo Clinic, and was transported to Rochester by air on Mayo One. Her parents, Jamie and Tara Weigel, drove to Mayo to be with their two-day-old daughter. Upon arrival, doctors told them that she had a severe form of HLHS.

Rylie remained at the Pediatric Intensive Care Unit at Mayo Eugenio Litta Children's Hospital, part of Saint Marys Hospital, for about six weeks on an intravenous medication that keeps the right side of the heart open to supply the body's circulation while waiting for her new heart.

The call comes

On Dec. 18, Rylie's parents had been home visiting for a couple of days when they got a call from her doctors — there was a heart available for Rylie. She would soon be getting a transplant — at only seven weeks of age.

They drove the 400 miles to Mayo Eugenio Litta Children's Hospital to spend a couple of hours with Rylie before she went into surgery. During the coordination of Rylie's transplant, the minutes felt like hours, Tara remembers. Rylie went in at 3 p.m., and 13 hours later, at 4 a.m., came out with a new heart.

After surgery, her problems were not yet over — Rylie's new heart was not functioning properly. She was put on a machine that maintained circulation so her body could adapt to the heart. After being off the machine for a few days, she was having difficulty breathing — her body was rejecting her new heart. Doctors gave her steroids, and within a week she seemed fine.

But a week later, Rylie was acting distressed again. Her right lung had collapsed. She had to go into surgery so doctors could repair the lung.

After this last obstacle, she was finally on the road to recovery.

Getting to normal

After spending nearly three months at the transplant center at Saint Marys Hospital, Rylie was healthy enough to leave Jan. 24, 2003.

To be near the hospital for her ongoing checkup appointments, she and her mother stayed at the Ronald McDonald House (opens in new window), a house for families to stay that have a child being treated at Mayo, just blocks away from the hospital, until March 11, 2003.

Now a happy, healthy toddler, Rylie enjoys swinging, being outside and playing with her sisters.

Dr. Joseph Dearani, a pediatric heart transplant surgeon and one of Rylie's primary physicians, says her prognosis is good.

"Despite the many challenges, joys and heartbreaks, most children continue to enjoy a nearly normal lifestyle after heart transplantation," he says.

Her parents are very grateful for the care that she received at Mayo Clinic.

"The doctors, nurses and the whole transplant team not only took care of Rylie, but they took care of our whole family," Tara says. "If it wasn't for these amazing people and the donor for Rylie, she wouldn't be here with us today."

Tara says her daughter's experience has changed her family's lives, and has brought them all closer. "The biggest thing we've learned is not to take life for granted," she says. "We should all be grateful that God gives us life."

Tara now stays home with Rylie and her other daughters, Samantha, 9, and Alexandra, 7.

"Life is too short and those baby years just seem to disappear too quickly," Tara says. "I consider myself a very lucky mom to be able to not miss a thing — even the crabby days."