|
|
|
|
|
|
|
| Press
Releases Packard
Children's News
Children's Fund
Update |
|
Kayla's story: An everyday miracle at Packard Children's
|
 |
Kayla's first Christmas |
Kayla Stephens is not one of those cases. Even though she was born with a severely deformed heart, has survived three complex heart surgeries, and will require a lifetime of careful monitoring, her case is considered routine at Packard Children's. Her story is one of the countless miracles that occur every day at the Hospital.
When Liza and Mike Stephens left work at Intel on July 15, 2002, they were eager to see the very first pictures of their unborn child. In her 18th week of pregnancy, Liza was set to undergo a routine ultrasound at a clinic in Carmichael, California. The results, however, were anything but routine. Something was wrong with their baby's heart.
A week later, a more thorough ultrasound revealed that the baby's right ventricle was under-developed. The Stephens were referred to Packard Children's Hospital--home to one of the largest and most successful programs in the country for specialized pediatric cardiovascular surgery.
At Packard, they met with V. Mohan Reddy, MD, chief of Pediatric Cardiothoracic Surgery, best known for his pioneering heart surgery on the tiniest infants. Reddy ordered a fetal echocardiogram to pinpoint the exact nature of the baby's heart deformity. The test revealed tricuspid atresia (TA), a rare congenital heart defect that occurs in five of every 100,000 live births each year.
 |
Kayla in snow |
When the tricuspid valve does not develop properly, oxygen-poor blood is prevented from passing from the right atrium to the right ventricle and on to the lungs to get oxygenated. Infants with TA generally have blue discoloration of their skin and easily become short of breath. They require a series of operations in the first three years of life to reroute blood so that enough oxygen is added to the bloodstream. Long term, children with TA face an increased risk of complications such as heart failure and may require a heart transplant later in life.
"When we first heard the diagnosis, we were so devastated,"recalls Mike Stephens, Kayla's father. "But Packard really gave us hope. They made a disastrous situation bearable."
After three and a half months of weekly trips from their home in Folsom, California to Packard, Liza was induced and gave birth to seven-pound, 10-ounce Kayla on December 3, 2002. Two weeks later Kayla was scheduled for her first round of heart surgery.
 |
| The Packard Children's Heart team, made up of 40 to 50 specialists, meets weekly to discuss each patient's individual case. |
Kayla's surgery was thoroughly planned by the Packard Children's Heart Center team, an interdisciplinary group of 40 to 50 specialists that includes cardiac surgeons, cardiologists, anesthesiologists, cardiac intensivists, radiologists, neonatologists, nurses, nurse practitioners, physician assistants, trainees, students, and interns. This group meets every Wednesday for two to four hours to plan upcoming surgeries.
 |
Pediatric Cardiologist Daniel J. Murphy, Jr., MD |
"We go through findings, look at images, discuss what we know about outcomes, and prepare a management plan for the patient," explains Daniel J. Murphy, Jr., MD, Kayla's cardiologist and director of the Pediatric Cardiac Clinic Program at Packard Hospital. "At Packard, no child is managed by just one doctor. Patients don't just get a second opinion; they get a third, fourth, fifth, and sixth opinion.”
Kayla's experience is representative of the coordinated approach that takes place daily at Packard Hospital, adds Stephen J. Roth, MD, MPH, director of the Cardiovascular Intensive Care Unit. While the primary cardiologist coordinates a patient's care, a group of highly specialized medical professionals, all of whom are trained in pediatric care, also participate. "That's what makes Packard special,"adds Roth. "And that is how we get the results we do."
During Kayla's initial surgery, Reddy inserted a pulmonary artery band to protect her lungs from high pressure and excessive blood flow. In what later became a trend, Kayla did remarkably well and was discharged in just five days, well in time for Christmas.
But in March, Kayla became irritable and fussy, and an echocardiogram showed her heart was under increasing stress. Reddy immediately performed her second surgery--a more complex procedure known as a bidirectional Glenn shunt--as an intermediate step before her final surgery.
"The second surgery was harder for us emotionally, knowing what to expect,"recalls Liza, Kayla's mother. "But the staff at Packard is unbelievably helpful, just phenomenal with kids. We knew we could trust them and that everything would be okay. We feel so blessed to live close to Packard."
 |
Kayla swimming |
Over the next two years, Kayla did well and was seen every three months by Murphy. The third surgery would depend on her weight gain and her oxygen saturation levels--or her O2 sats--a number the Stephens casually roll off their tongues like medical doctors.
At age 3-and-a-half, Kayla underwent her final and most complicated surgery, known as a Fontan procedure. This allows all the oxygen-poor blood returning to the heart to flow into the pulmonary arteries, greatly improving the oxygenation of the blood pumped to her body.
The surgery significantly improved her symptoms. Gone were her shortness of breath and blue coloring. "It was a night and day change,"her mother says. Since then, Kayla's O2 sats have been hovering near normal--95 percent to 98 percent.
The team at the Children's Heart Center looks well beyond the immediate results of surgery and care. "We want the child to do well in the long term,"Murphy says. "Part of that is constantly evaluating the therapies we use to minimize risks and improve results, and treat patients with the most up-to-date knowledge we have."
Thanks to such attention, the Stephens family today leads a normal life, juggling demanding jobs at Intel and two growing daughters--Kayla, 4, and Katrina, 2. The only reminder of Kayla's struggles occurs every six months when they come to Packard Children's for check-ups. But the visits now are filled with hope and friendship, and a welcome chance to reconnect with the physicians who saved her life.
 |
Kayla with her sister, Katrina |
"Kayla is an example of the extraordinary care that happens every day at Packard Hospital,"Murphy notes. "Without surgery, she had little chance of survival. After three successful surgeries, we expect her to live a long, healthy life, with a chance that she will never need a new heart. The facilities, research, and educational activities at Packard are creating today's headline stories and transforming them into tomorrow's everyday miracles."
| |||||||||
 |
