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Karly Kavanaugh

Love in their Hearts.

Karly Kavanaugh. Children's Hospital & Medical Center. diagnosed with Kaposiform hemangioendothelioma (KHE), a rare vascular tumor in her left thigh.Tiffany Kavanaugh knew in the first moments after the birth of her daughter, Karly, at a Lincoln, Neb. hospital that something was terribly wrong. She didn't cry, and her left thigh was red and swollen.

Karly was airlifted to Omaha to take advantage of the specialized care the Newborn Intensive Care Unit at Children's provides the most critically ill newborns.

"Her left leg was almost three times the size of her right leg," Tiffany recalls, "but that didn't faze the nurses at all. As her mom, that was one of the most powerful things for me. They looked past her problems, and they gave her tender loving touches and care."

Karly was diagnosed with Kaposiform hemangioendothelioma (KHE), a rare vascular tumor involving her left thigh, abdomen and back. In addition, a life-threatening condition known as Kasabach-Merritt phenomenon was trapping and destroying the blood platelets her body needed for normal clotting. Karly faced the risk of bleeding to death.

"The NICU nurses were very poised in some very difficult situations," Tiffany says. "Their expertise and calm manner helped us stay calm."

Karly's primary treatment consisted of 15 weekly treatments of chemotherapy to correct the platelet disorder.  The tumor also began to shrink in size.  The team at Children's consulted with other medical specialists who had particular expertise with KHE.

In addition to the tumor and blood disorder, she had a separate disorder called tracheomalacia. Prior to birth, the cartilage in her trachea (airway) had not formed properly and was prone to collapsing. At 4 months old and still in the Children's NICU, Karly received a tracheostomy tube (which was removed later) to help her breathe.

Karly Kavanaugh. Children's Hospital & Medical Center. diagnosed with Kaposiform hemangioendothelioma (KHE), a rare vascular tumor in her left thigh."It was hard for us to comprehend it all," Tiffany says. "But the nurses taught us how to follow a different path. They began to show us the difference between a good day for a regular newborn, and a good day for Karly."

As the days and weeks passed, Tiffany and her husband, Doug, were at their daughter's side as much as possible. Tiffany quit her job as a private counselor and therapist. "Of her 199 days in the NICU," she says, "I was there for 196 or 197 of them."

The Kavanaughs drew strength from the compassion of the NICU nurses, physicians and other medical specialists at Children's.

"They really seemed to care about the little details, like a mother would," Tiffany says. "And they showed me the little details that I could care about, especially when we were going through some of the really stressful times. Like, I remember when I got there one day and the nurse said to me, 'Karly has been smiling so much today, her cheeks have to hurt.'

"Those little things really made a big difference."

Even relatively common moments became special.

"Holding her and bathing her were highlights on a daily basis," Tiffany says. "It's a very involved process, bathing a child on a ventilator. It would take two or three people to get her clean.

"Sometimes, because of the chemo or being tube-fed, she'd vomit or have a diaper explosion as soon as they were done. But they always treated it like it was no big deal. They were always willing to keep her clean and smelling good.

"We had a lot of valleys to go through," she says. "They led me and showed me how to demonstrate love for this baby."

Hospitalized since Memorial Day weekend, Karly was released from the NICU and home to celebrate Christmas Day 2005.

Karly Kavanaugh. Children's Hospital & Medical Center. diagnosed with Kaposiform hemangioendothelioma (KHE), a rare vascular tumor in her left thigh.Now fully recovered, Karly attends preschool and enjoys music and playing with her older brother, Chase. Tiffany says that whenever they drive past Children's, Karly points out the window and proclaims, "That's my hospital!"

During the nearly seven months that Karly spent in the NICU at Children's, the nurses cared for more than Karly's needs.

"We have warm memories - and love in our hearts - for everyone at Children's, especially the NICU nurses," Tiffany says. "They took care of our whole family. The way they served us helped meet our emotional and spiritual needs as well.

"There were a lot of things that kept us going. We pray, and we have a lot of faith in God. The skill we found in the people at Children's is how He answered our prayers. Children's never gave up on her."

© Children's Hospital & Medical Center | In Affiliation with University of Nebraska Medical Center College of Medicine