Two moms, and a whole lot of care, save young girl's life

Lucile Packard Children's Hospital Davan Jones with Leanne Jones and Arica Stilha

Davan Jones, who was born in December of 2011, with parents Leanne Jones, left, and Arica Stiliha. Davan has been treated at Lucile Packard Children's Hospital for numerous health problems.

For Arica Stiliha and Leanne Jones, it would be tough, if not impossible, to ever have a baby.

Arica had endometriosis, a condition in which tissue that lines the uterus develops outside it, often causing infertility. Leanne had uterine cancer. So the Chico, Calif., couple made the loving commitment to adopt soon-to-be born Davan Jones, even though they knew prior to birth that Davan would face huge medical problems.

Since Davan's birth and adoption in December 2011, she has spent more than 75 percent of her life at Lucile Packard Children's Hospital, which is known for taking on some of the toughest pediatric cases in America. The problems Davan faced were beyond scary: three holes in her heart, a left ventricle obstruction, abnormal pulmonary and mitral valves, a narrowing of her aorta, plus a life-threatening liver condition called biliary atresia. Despite the challenges to their child's health, the couple said Davan was "destined" to be theirs.

Davan, whom her mothers say is a superhero, has been on quite a rollercoaster ride since birth. When she was only 3 weeks old, Packard Children's surgery team recommended a procedure to help correct the bile duct deformity and intestinal problems caused by biliary atresia. But that was only step one of the multidisciplinary and aggressive strategy used to care for Davan.

Cardiologist Sharon Chen, MD, was hoping Davan could gain weight prior to fixing her multiple heart problems, but her heart could no longer wait to be repaired. In June 2012, cardiothoracic surgeon Mohan Reddy, MD, renowned for fixing the smallest of hearts all over the world, delicately repaired the endless problems in 6-month-old Davan's heart. Reddy, who is chief of pediatric cardiac surgery and a professor of cardiothoracic surgery, opened the baby's left ventricle, enlarged the pulmonary valve, patched one of the bigger holes, closed the other two holes with sutures, patched the narrowing in her aorta and repaired the cleft in the mitral valve.

"It clenched my own heart to see my child lying there," Arica said about seeing Davan after the surgery.

While the heart fix was a big success, Davan's liver was still in trouble. The little girl was still extremely underweight and had "skin hanging from her legs," said gastroenterologist Melissa Hurwitz, MD, clinical associate professor of pediatrics. Fevers, sepsis, multiple bouts of cholangitis, spleen enlargement, jaundice and more meant that a liver transplant was Davan's only option. In fact, when transplant surgery pioneer Carlos Esquivel, MD, PhD, examined her, he said, "Her liver is like a rock." Esquivel, professor of surgery and chief of division of transplantation, leads America's largest pediatric solid organ transplant team.

After a year of steep challenges, Davan was placed on a liver transplant waiting list in December 2012. However, when several weeks passed with no offers of donor livers, the medical team began to worry that Davan's worsening health would soon make her too sick to receive a transplant. To speed the surgery, they decided to use a donor organ that did not match Davan's ABO blood type, a step that many other hospitals avoid.

"There is some concern that the risk of rejection is slightly higher when you cross blood types, but we have had great success with this type of transplant in our younger population," said Hurwitz, noting that Packard Children's has performed more than 20 such liver transplants in children less than 4 years old. Young children's immature immune systems appear less prone to reject a liver with a mismatched blood type, and the Packard Children's team also tailors the child's immune-suppressing drugs to account for the mismatch.

The strategy worked beautifully. Davan's new liver was transplanted on Feb. 26 by Esquivel and Clark "Andy" Bonham, MD, associate professor of surgery. She has had no signs of organ rejection, and she finally went home for good on April 16. Now, all she has left are regular follow-ups at Packard Children's.

Arica and Leanne use Davan's medication time to remind their daughter of the gift of organ donation: "This donor gave our child life. Making sure Davan takes her daily medication fulfills this donor's gift," Arica said.

While Davan is not able to utter whole sentences yet — only happy squeals — her mothers have become her voice: "We believe there are no coincidences in life," said Leanne about the fight for her daughter's life. "Arica and I got the best gift ever in Davan, and we will always be thankful to everyone on the team at Packard Children's for ensuring we'd be able to take her home."

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