Two Penneys For Your Thoughts

For Kati and Jon Penney of Bethesda, the birth of their second and third children brought unimaginable challenges and worries—and joy

By Lisa Braun-Kenigsberg

Kati Penney remembers the exact moment when her life changed forever.

It was Halloween day 2002, and Kati, then 12 weeks pregnant with her second child, went in for a routine ultrasound. Husband Jon was out of town on business but she figured there was no reason to worry. The sight of the costumed medical staff made her laugh as she lay on the examining table.

The technician seemed to be struggling to get a good picture of the fetus and kept going back to the same spot. Momentarily stalling by saying it was the angle or the equipment, she calmly asked Kati to move to another room with a “better” machine. After Kati changed rooms, the technician left her lying on the table to bring in the radiologist.

After more probing with the ultrasound wand, the doctor told her that the baby’s heart looked like it had three chambers.

“How many is it supposed to have?” she asked.

The answer: “Four.”

For Kati and Jon, that moment marked the beginning of a life-and-death journey with their soon-to-be-born daughter, whom they would name Katrina. They could not possibly fathom the unimaginable challenges still to come, and the tests of strength they and their family would face. And they probably couldn’t fathom how they would respond—how as individuals they would grow stronger, and as a couple they would grow closer.

“We wouldn’t wish it on anyone, but we also wouldn’t change anything,” says Jon, 35. “We’ve learned so much from it and it has made us who we are.”

The prospect of open-heart surgery
The ultrasound was performed on a Friday; the couple spent an anxious weekend waiting for the recommended Monday echocardiogram of their baby’s heart. At Children’s National Medical Center in Washington, D.C., pediatric cardiologist Craig Sable of Potomac drew diagrams and showed them what was wrong.

Sable told them that their baby was going to need open-heart surgery, possibly involving three separate surgeries: the first at birth, the second around 5 months of age and the third at 18 months. He recommended several national medical centers. They chose the Children’s Hospital of Philadelphia (CHOP), near Kati’s hometown of Drexel Hill outside of Philadelphia and close to where her parents now live in Broomall, Pa.

At 3 p.m. on March 10, 2003, Kati, 35, was induced at the adjacent Hospital of the University of Pennsylvania, with no fewer than 20 medical personnel in attendance for the birth of Katrina.

 “It was like an assembly line in there,” Jon recalls. “They passed [the baby] right through.” With Katrina placed in a covered bassinet, Jon, along with a half-dozen doctors, went through an underground tunnel to the adjoining children’s hospital and then directly to the cardiac intensive care unit.

“It was such a surreal time,” he says.

The following afternoon, Kati and Jon met with Dr. Meryl Cohen, a pediatric cardiologist and director of the hospital’s echocardiography lab. She explained that Katrina’s heart defects were far more extensive than earlier suspected. Then came the bombshell: Cohen told them that Katrina’s best option was not surgery, but a heart transplant. Katrina was just 24 hours old.

“We both went completely numb. The word ‘transplant’ is so foreign—you’re going to put someone else’s heart in her?” Jon says.“The two of us had an emotional half-hour together. It was like getting hit by a truck,” Jon recalls. “But we had supreme trust in [the doctors]—they were phenomenal.”

“[Jon and Kati] are really special people who were able to pull it together, ask thoughtful questions, and act as a great team when faced with this serious problem. They are an incredible family with tremendous emotional resources,” says Cohen.

After the couple left the room, the first person they saw was the Catholic priest from Drexel Hill with whom Kati’s large extended family had a close relationship. Father Michael Murphy immediately baptized Katrina. At this point, only Kati and Jon knew the devastating news. Waiting anxiously nearby were Kati’s and Jon’s parents as well as all eight of Kati’s siblings, their respective spouses and Jon’s brother.

As soon as they saw their mothers, Kati and Jon broke down. Jon’s father, Bill Penney of Easton, Mass., tried to reassure the young parents. “A heart is just a pump—it’s not her soul,” he told them.

Kati’s mother, Rosemary Reger, mother of nine and grandmother of 30, recalls, “There were tears, questions, hugs and prayers. Faith is a big part of our family. We had people of all religious backgrounds [at the hospital] praying for us, and we prayed for them. Everyone pulls for everyone there.”

A week later, Katrina was moved out of the Cardiac Care Unit into a step-down unit where she remained for the next four weeks. Jon, an architect with the Lessard Group in Vienna, Va., commuted on weekends to Philadelphia where their firstborn, Arianna, then age 2, went daily to a local childcare center with her cousins. Katrina was allowed to leave CHOP to go only as far away as Kati’s parents’ house. She needed to be nearby if a heart became available.

The wait for a new heart
With her poorly functioning heart, it was too exhausting for Katrina to nurse, so she was discharged from the hospital with a feeding tube which snaked through her nostril into her stomach. Both Kati and Jon had to learn how to properly insert the tube, making sure it actually reached her stomach instead of straying into a lung, for instance. It was a task they never dreamed they would ever need to do, or successfully accomplish. But they did it.

Four more weeks went by while Kati worked hard to keep Katrina in a virtual bubble, as germ-free as possible. When a heart became available, any sign of infection could mean  the organ would be passed along to the next child on the list.

On May 15, 2003, Jon arrived from Bethesda early and surprised Arianna at a birthday party for the 3-year-old in the basement of Kati’s parents’ house. Kati asked the birthday girl to make a wish. Arianna replied, “I wish for Katrina to get a new heart.” Her mother tried not to cry—“I knew how hard it was on Arianna, and realized how much she had gone through with us,” Kati says.

On Saturday, May 17, Jon had gone out for the day to golf with several of his brothers-in-law. Katrina remained with Kati’s mother while Kati took Arianna to a birthday party. During the party, Kati’s cell phone recorded a missed call—but the number was unknown to her and had no significance.

Meanwhile, Jon was about to tee off on the 18th hole when his cell phone rang. It was the transplant nurse, who told him, “We found a heart.” The nurse had first tried to reach Kati, but had been unsuccessful. Jon started screaming the news to the assembled relatives and then immediately called Kati.

Jon drove back to his in-laws’ house at 80 miles per hour. They packed bags as quickly as possible and went straight to CHOP, where an isolation room was ready for them.

“People asked if we were nervous, but it was more like, ‘Let’s get this show on the road,’” Jon explains.

At 6:30 that night, the hospital’s helicopter was sent to the New York area to “harvest the heart.” They could see and hear the chopper taking off and then disappearing into the distance. By 8 p.m., Katrina was taken from them so that her chest could be opened and made ready to receive the new organ.

At exactly 12:50 a.m.—the time was so momentous that they took a photograph of the wall clock—Kati and Jon were sitting alone in the glass-enclosed atrium. The hospital at that hour was eerily quiet and still. Then, the whirring of the rotors could plainly be heard and bright lights shone through the glass ceiling as the helicopter came in for a landing.

Katrina’s heart had arrived.

It took cardiothoracic surgeon Thomas Spray four hours to give the 9-week-old a new heart the size of a walnut, with veins the size of threads.

Close to dawn, Jon and Kati were allowed to see their infant daughter. “When I first saw her, I felt sick,” Jon remembers. “She had about 12 tubes in her.”

Twelve days later, Katrina was discharged, and Kati, Katrina and Arianna remained at Kati’s parents’ house for another six weeks so that Katrina could be seen three times a week at CHOP’s clinic, while Jon continued to commute from Bethesda on weekends.

The couple had to give Katrina a staggering number of medicines, using dozens of different syringes squirted into her feeding tube. A light day could mean 24 doses; a heavy day, up to 40. (Today, Katrina takes immunosuppressive medications by mouth twice daily to prevent organ rejection. She will need to take the drugs for the rest of her life.)

‘A sense of normalcy’
On the Fourth of July 2003, the family finally returned home to Bethesda. Kati resumed her job as an accountant at Ernst & Young in September and, Jon says, “We tried to create a sense of normalcy.”

The first winter was rough. Katrina had multiple colds and developed pneumonia at 9 months. Over time, there were eight trips to the emergency room at Holy Cross Hospital. “They know us well,” Jon says. But since those early months after the transplant, “she’s been doing super,” he adds.

Since Katrina’s condition was determined to be developmental and not genetic, Kati and Jon decided to have another child. “I always wanted three kids, even after all of that. It was never going to happen again,” Jon remembers thinking at the time.

So Kati became pregnant and, to be safe, her doctor ordered an ultrasound every four weeks. At 28 weeks, she was told that everything looked normal. But her obstetrician suggested one more test, at 32 weeks. So, on the next visit, with Jon and Arianna in tow, Kati assumed it would be an “in-and-out kind of thing,” or, as she puts it, just putting “jelly on the belly.”

But when the obstetrician for high-risk pregnancies came in this time, there was none of the usual small talk. He went straight to work, taking measurements of the fetus, with a particular focus on what seemed to be the brain. While the doctor worked, Jon and Kati kept looking at each other.

Then, the doctor put down the ultrasound wand and told them he was sorry, but it did not look good. The baby had had a brain hemorrhage. They were told to get an MRI at Children’s Hospital in D.C.

For Arianna’s sake, the couple struggled to stay calm.

‘The knockdown blow’
Somehow, they managed to get to their car and drive Arianna to school. By that afternoon they were at Children’s, where they were shown pictures of the baby’s brain. There was no explanation as to how it had happened, but all the same, the fetus had suffered what was called a “grade 4 hemorrhage.”

Again, they had to ask, “How many grades are there?”

The answer: “Four.”

“It was like getting punched all day and then receiving the knockdown blow,” Jon says.

The news got worse. Babies with this condition are frequently born deaf, blind and mute, and usually require round-the-clock care. Typically, they become institutionalized. Sometimes, they don’t survive the birth because the damaged brain may not be able to tell the body to breathe.

Kati and Jon sat in their car in the hospital’s parking lot and had what they call “a breakdown.” Then they pulled themselves together, and continued with their lives, working and caring for their daughters.

Kati’s Ceasarean section was scheduled for May 19, 2005, at George Washington University Hospital. Over the course of the next few weeks, she could feel the baby become quieter in utero. “It was scary,” Kati says, “and we prepared for the worst.”

“With Katrina, it was like, ‘Let’s go, let’s get it done,’ like being at the starting line,” Kati explains. But with this baby, it was like “giving birth to what could be the end.”

The week before the scheduled delivery, Katrina developed a severe cold, which was suspected to be another bout of pneumonia. She was admitted to Children’s.  From Monday through Thursday of that week, Jon slept at the hospital with Katrina. On Thursday, he went to George Washington Hospital with Kati to bring their new daughter into the world.

So it was that on May 19, the newest member of the Penney family, Lucienne, was born, attended by 30 medical staff. When she opened her mouth and let out a cry, everyone in the room was relieved. Jon briefly held her and then she was taken away for testing.

Meanwhile, Katrina was discharged from Children’s in the care of Kati’s sister, Elizabeth, who took Katrina to meet her new baby sister at G.W. Hospital. Unbelievably, as Elizabeth and Katrina were arriving at G.W., Jon and newborn Lucienne were in an ambulance racing to Children’s.

Meeting the challenge
It was determined that the baby had more brain matter than previously thought. The news was, in fact, better than expected. To correct the hydrocephalus (an abnormal buildup of spinal fluid in the brain) which had developed as a result of the hemorrhage, a permanent shunt had to be implanted to drain the excess fluid. She was discharged two days later. Over time, both an infection and then a shunt failure occurred, requiring two more runs to the emergency room at Holy Cross.

“I could drive an ambulance by now,” Jon says.

As a result of her brain injury, Lucienne has Cortical Visual Impairment (CVI). The structure of her eyes is intact but messages transmitted to the part of the brain where visual images are received arrive unclear or distorted, leaving her vision-impaired, but not blind. In addition, she has cerebral palsy on the left side of her body.

Remarkably, in the two years since Lucienne’s birth, it appears that her brain is starting to recover. “Lucienne’s done great and she’s doing better all the time,” says Dr. Robert Keating, chief of neurosurgery at Children’s.  The toddler is able to react to light or reach for a toy, and shows increasing use of her left hand. She gets weekly visits from a vision therapist, a physical therapist and an occupational therapist and, thanks to Montgomery County’s Infants and Toddlers program is steadily improving. Oddly, when Katrina graduated at age 3 from the same program, it was her sister Lucienne who took her spot.

“[Kati and Jon] are doing everything they can for this child. They are great parents. I respect and admire them. They have stood up to the challenge,” Keating says.

As Kati explains in an e-mail, “[Lucienne] progresses every day—she feeds herself, entertains herself (and us), laughs, babbles, etc. And although sitting took until she was almost a year, or bearing weight on her legs until she was 18 months, these are all milestones which we never expected. Her visual ability has skyrocketed … and one thing for sure, there was no delay in her bringing smiles and joy to both Jon and me and her sisters.”

Not long ago, Kati and Jon met a 17-year-old girl at Children’s who also had been born with a grade 4 brain hemorrhage. The young woman expects to graduate this year from a high school honors program.

The teen gave them this advice: Treat Lucienne no differently than anyone else.

“[Meeting her] changed us. It added some motivation, makes us tougher on Lucienne, with a compassionate edge,” Jon says.

There are still many unknowns about how far and how fast she will develop. “We’re not waiting for the end—we’re waiting for the beginning, to get her viable and living on her own,” Jon says.

Kati says that “the last thing we want is pity for Lucienne or Katrina, or sympathy for the rest of us. We want the opposite—we want to inspire hope.”

Jon’s mother, Nancy Penney, says of her son and daughter-in-law, “I’m in awe at how they handle it. They have such a wonderful attitude about life. You don’t know what you have inside until you face something like that. They give strength to everyone around them.”

Says Jon: “It’s brought Kati and me closer.” The couple, who first met as students at Catholic University, has been married for 10 years.

A special celebration
Each year in May, the Penney family celebrates a special week. It marks the births of Arianna and Lucienne and the remarkable “rebirth” of Katrina.

 The family goes to the wide-open field outside the Music Center at Strathmore and releases three balloons: one blue, one pink and one red. The blue and pink balloons represent the unknown baby boy or girl from whom Katrina got her heart; the red one symbolizes the heart itself. The family is determined to remember that while Katrina’s heart brought her a new life, for another family it meant a tragic loss, and for that gift they are forever indebted.

On the walls of the stairs leading up to the second floor of their Bethesda house, Kati has hung a collection of wooden signs  with inspirational messages like “Never, Never Give Up,” “Follow Your Heart,” “Families are Forever” and “Believe in Miracles,” alongside photo collages of their children.

Downstairs, Arianna is listening attentively to the adults’ conversation. When Katrina starts to get fussy, the first-grader at St. Jane Frances de Chantal School in Bethesda gets a book and sits down on the kitchen floor to read to her little sister without being asked.

Where the older girl is strikingly calm and motherly, Katrina—a preschooler at the Bethesda Community School—brims with irrepressible chatter and motion, especially as she whirls away in her pink hula hoop. Lucienne, meanwhile, sits quietly in her high chair, picking up Cheerios while her big blue eyes look around the room without the direct gaze of other babies.

The house suddenly bustles with activity. Jon is taking the three girls downtown to the Washington Auto Show, followed by a stop to play at ESPN Zone. But first, Lucienne’s diaper has to be changed, juice boxes and snacks packed up and jackets put on. They are just like a “normal” family—whatever that may be—which is exactly how Jon and Kati want it.

Dark-haired Jon—called a “big teddy bear type of a guy” by his mother-in-law—and his bevy of little blondes head out the door. Before they can leave, however, there is a hurried discussion about Katrina’s choice of footwear. She insists on wearing her favorite ladybug rubber boots, the ones with the protruding eyes on the toes—on what appears to be a perfectly cloudless Saturday afternoon.

It is quickly agreed that Katrina may wear the boots.

You never know when a sudden rain might fall.

Writer Lisa Braun-Kenigsberg lives in Potomac.