wave3.com-Louisville News, Weather & SportsHeart transplant saves baby girl's life

By Lori Lyle - bio | email

LOUISVILLE, KY (WAVE) – Louisville's Kosair Children's Hospital is back in the business of transplanting tiny hearts. The team took about a year off to research and improve its transplant techniques, then reopened the program just in time for a not-so-tiny miracle.

At 13 weeks old, Eleanor Westenhofer is going home for the first time. Inside her hospital room at Kosair Children's Hospital where she's lived since birth, the relief is clearly spread across her parents faces.

While mom Lindsey said, "She's not hooked up to anything now," dad Damon remembers a much different picture with Eleanor wrapped in wires and taped with tubes.

"But just the fact that she was there," Damon said as he shook his head in amazement.

At the first ultrasound, the Westenhofers suspected something was wrong as doctors lined up additional ultrasounds to see Eleanor's heart more clearly. Finally at week, 25 they got the devastating news.

Lindsey said the cardiologist had just performed yet another ultrasound and when he met them back in his office to explain what he saw.

"He told us there was a very good chance she would spontaneously abort is the words he used," said Lindsey.

Eleanor's tiny heart had a huge defect. Lindsey said that half of it  was not functioning.

"It was a horrible time," recalled Damon. "We just decided we can either give up, or we can just hope for the best. That's what we did, just hoped and prayed."

Having already made copies of those first ultrasound pictures, they started passing them out to family and friends. People around the community put Eleanor on prayer lists. As days turned to weeks, Lindsey could feel Eleanor wasn't giving up without a fight.

"That's what kept me sane" Lindsey said, "is the fact that I could feel her moving. It's just been one miracle after another. Every appointment we went to she was doing fine. The heart defect never went away."

In a planned C-section at 38 weeks pregnant, Lindsey delivered Eleanor on October 12, 2010. And just like any typical newborn, Damon listened and heard Eleanor crying.

"It was amazing," said Damon.

After a quick look, the doctors and nurses whisked Eleanor away to the awaiting team of heart experts at Kosair Children's Hospital.

"We actually set things up so that when Eleanor was born she went straight from the OB suite to our cardiac catheterization lab," said Dr.  Erle Austin, the chief of Cardio Thoracic Surgery at Kosair.

Dr. Austin said with the team in place ready to repair Eleanor's heart, they quickly realized the problems were just too severe. According to Dr. Austin, less than 1% of live babies will have a heart defect and most defects can be surgically repaired. But for Eleanor, Dr. Austin said the decision was clear.

"She'd have a longer life expectancy with a heart transplant than any type of repair that we might of tried," said Dr. Austin.

Though rare, only three to six heart transplants a year at Kosair, without the transplant Dr. Austin says Eleanor would face, "death probably, within a year or so."

So at 10 days old, Eleanor's need for a new heart similar in age and size went to the top of the waiting list. Dr. Austin said it is not lost on anyone connected with this story that in order to do a transplant another child had to die. Dr. Austin said many children in need die waiting.

Eleanor waited two months exactly and underwent two surgeries to keep her heart and lungs going until the new heart came. It was December 22nd when Lindsey and Damon got the news.

"It was the best Christmas ever, it was the most stressful Christmas ever" says Damon.

As Eleanor about to receive the most generous of gifts, Lindsey remembers thinking of the family that was just experiencing what had been their greatest fear - that they would lose Eleanor while waiting.

"All you can do," Lindsey said, "is be extremely grateful to that family for being able to make that decision through their grief. To give us that gift to give her a chance to live."

To keep living, Eleanor is on a strict medication schedule. Of the 11 medications she takes, three are anti-rejection drugs. Eleanor doesn't enjoy taking the medicines, most of them taste bad, so Lindsey said their trick says mom is "just do a little bit at a time."

That is much like their life - taking one day at a time and amazed at each new day. All the medications aside, Dr. Austin says Eleanor will be a typical child.

"You have to be a little more careful, but we wouldn't keep her from growing up and going to school and playing with friends," said Dr. Austin.

With Eleanor in their arms and her future filled with possibility, Lindsey said it is just impossible to describe after everything we've been through. But Damon sums it up like this, "she's amazing!"

Eleanor will remain under the close watch of Dr. Bibhuti Das with UofL Pediatric Cardiology Associates.

To follow her progress online, just click on the following link: www.ihearteleanor.com.

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