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Tom Smart, Deseret Morning News
Shauntelle Stephenson, mother of Kaidence, thanks medical personnel along with her husband, Mike, and children McCaden, left, and Camden on Thursday.

Surgeons at Primary Children's Medical Center have successfully implanted a ventricular assist device in an infant.

Kaidence Stephenson, 8 months, is recuperating following Wednesday's surgery, which was the first use of a VAD at the children's hospital and the first pediatric implantation in the region.

"Wonderful" is how mom Shauntelle Stephenson tearfully described her baby's progress, after weeks of increasingly bad news.

The infant daughter of Shauntelle and Mark Stephenson, Bountiful, developed heart failure for no apparent reasons, then started a dramatic decline that had her listed for a heart transplant three weeks ago. Late last week, it was clear that the baby girl was unlikely to live for a transplant, and her medical team applied for "compassionate use" of the Berlin Heart, which is not yet approved by the U.S. Food and Drug Administration.

The device has taken over the job of the left side of her heart.

The Berlin Heart is still in clinical trials, but it is the only heart-assist device small enough to use in tiny patients like Kaidence. It only took about 72 hours to document the case and get the University of Utah's Institutional Review Board and the FDA to agree to its use for the little girl, who was clearly failing, said Dr. Melanie Everitt, cardiologist and medical director of the Primary Heart Failure Program.

The surgery marks the birth of a long-anticipated pediatric VAD program at Primary, where doctors and nurses have been training and getting ready for about a year, according to Dr. Peter Kouretas, cardiovascular surgeon who implanted Kaidence's VAD. He's also surgical director of the Mechanical Circulatory Support Program.

Primary now has the only pediatric VAD program in the Intermountain Region.

Although there are several different VADs being developed for children and adolescents, the Berlin Heart is the smallest. Primary doctors are working with the University of Pittsburgh on development of a different VAD that resembles a stack of coins and is entirely implantable, which improves infection rates and durability, but it's only in animal trials now. And Kaidence's situation has been dire.

She was born healthy on Feb. 23, to the delight of her brothers, McCaden, now 6, and Camden, 3. In July, the family took a vacation to celebrate son McCaden's birthday, and virtually everyone in their extended group except Kaidence became ill with apparent food poisoning. But her mom noticed the baby was sweating a lot, and her cry had become increasingly weak.

Despite doctors' assurance that she looked fine, her mom said she could tell something was wrong. And when the baby developed a cough, a chest X-ray showed a heart that was so enlarged it eventually collapsed one of the baby's lungs. At Primary, she was diagnosed with dilated cardiomyopathy, cause unknown.

For three months, Everitt said, she was able to manage the baby's condition with medications, although she continued to decline to the point where she was placed on the list for a heart transplant. More recently, she had grown dramatically worse with development of extremely high pressure in her lungs, called pulmonary hypertension, which is a condition that can damage a new heart if it's not brought under control. She's also had trouble breathing and has shown signs of heart arrythmia.

When the medical team decided she might not survive for long, they sought permission to use the device, which has been used in Europe for some time but is "experimental" in the United States.

"The wait time seemed longer than Kaidence had," Everitt said.

"This offers potential for significant improvement," said Dr. Madolin Witte, medical director of the Mechanical Circulatory Support Program.

It restores the blood flow and can allow organ failure, including kidney and heart, to reverse. Falling short of that, it helps the patient get stronger and more stable for transplant. And it reduces complications and the course of treatment. Fewer blood thinners are needed, children can breathe more often on their own and leave the intensive care earlier.

Kaidence's kidneys are already working better, and she's reaching for her folks, although they haven't been able to pick her up for a month because she's on a ventilator and can't be moved around. "She looks like my baby again," a tearful Shauntelle Stephenson said.

She looks, added brother McCaden, "like a normal baby — more and more better."

Mike Stephenson said they hope Kaidence's heart will recover. "But either way, we are so grateful," his wife said. "This truly is a miracle in our lives."

She said the baby's already got a better quality of life, and they were heartened when one of the doctors showed them a video of other children with a Berlin Heart moving around and playing and being little kids.

Kaidence is likely to be in the hospital for at least a couple of months, her mom said.

Friends have set up a fund to help cover her lifelong medical expenses at America First, in the name Kaidence Stephenson. All donations are welcome, they said.

E-mail: lois@desnews.com