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Feature story: Delivering hope at Lucile Packard

Lucile Packard Children's Hospital celebrates 20 years of evolving medical care

Steve Martz cupped his infant son Samuel's tiny head in his hand, crooning softly into the glass incubator.

"Hey, little dude," he said, watching the baby's delicate lungs pumping hard to breathe.

Breathing and feeding tubes no thicker than strands of angel-hair pasta poked out from Samuel's mouth and wires connected him to a heart monitor in the neonatal intensive care unit, or NICU, at Lucile Packard Children's Hospital at Stanford.

When Samuel was born April 27, he was just 24 weeks into gestation. His birthday was supposed to be Aug. 11. He weighed 1 pound and 13 ounces and measured only 14 inches.

Martz and his wife, Stacey Foster Martz, held hands inside the incubator as they gently touched their firstborn.

"We're so thankful to be here," Steve said, noting the number of times he has watched warning bells go off around the roomful of tiny beds, including Sam's, and seen the nurses and doctors running to their patients' sides.

"I hear those bells in my sleep," Stacey said.

In the 20 years since the pediatric hospital opened, thousands of children have received a chance at life they might not have had if not for the care they get at Packard Hospital.

The 311-bed hospital is among the nation's top 10 in cardiology/heart surgery, neonatology and nephrology, according to the U.S. News Media Group's 2011-12 Best Children's Hospitals survey. Its cardiology and neonatology programs are the highest-ranked on the West Coast, and eight programs in all placed in the top 25.

On June 26, Packard Hospital will celebrate its 20th anniversary with a 5K/10K race and daylong party featuring storytelling, face painting, booths, music and more.

The hospital has led many innovations in pediatric medicine, including the discovery of a simple, inexpensive blood test to help doctors halt organ rejection before it impairs hearts and kidneys. It launched an industry-leading program for placental disorders and has been at the forefront of anorexia and childhood obesity treatment, according to the report.

When Samuel was delivered, Stacey's room was only steps away from the NICU. Packard places labor and delivery suites, newborn nurseries and neonatal intensive care next to one another -- a radical concept at the time, said Dr. David Stevenson, director of Packard's Johnson Center for Pregnancy and Newborn Services.

But the biggest change in patient care since Packard opened on June 10, 1991, hasn't been technological innovation, hospital officials said. It has been in so-called family-centered care -- how families are integrated into the decision-making process. Fifteen years ago, parents stood on the sidelines of decision-making, hospital officials said. Now they participate in every aspect of patient care, from going on rounds or being present during medical crises to joining hospital advisory groups.

Marilyn Anderson is one family member who returned with her husband, Arden, to volunteer at the hospital, following their granddaughter's liver transplant.

"It's really different in the 16 years since Miranda's transplant," Marilyn said.

"It seemed like parents were tolerated and medical people did their job. Now it's like teamwork," Arden, a family-care navigator, added.

"Family-centered care teaches parents how to use the system for their child. It helps doctors and nurses to understand how to communicate with parents on the raw edge of frantic concern," Marilyn said.

---

On Sunday, May 15, the Martzes were pushed to that raw edge, they said. Samuel had surgery on May 13 to repair a hole in a blood vessel outside of his heart, which normally closes on its own after a baby is born. He was having a couple of rough days, Stacey said.

As the couple comforted Samuel, they noticed his color wasn't right.

Stacey notified the nurse.

Then Samuel stopped breathing.

Samuel's oxygen levels, which are monitored on his foot with a tiny version of the finger oxygen monitor that was developed at Stanford, started dropping precipitously. Upping his oxygen level didn't help achieve the ideal 85 to 95 percent saturation rate the way it usually did, Stacey said.

A nurse began administering breaths manually, but Samuel's numbers kept dropping: 50 percent, then into the 30s, she said.

Bells sounded. All at once, everyone was in motion.

Samuel turned blue.

"Our hearts were in our throats, and we felt helpless. We thought he was going to die. His chest did not rise and fall," she said.

An issue with the tubing on the ventilator was fixed, and Samuel revived.

When things settled down, the nurse raised the incubator's lid and let Stacey and Steve touch their son. There are no visiting hours for parents of child patients, Karen Wayman, director of family-centered care, said.

"Families can be present when a child has a 'code.' Before, we used to make them leave the room. When I came in 1995, the expert-conducted model of medicine told families what things were going to happen and what doctors were going to do.

"Parents used to be considered visitors. Now we don't call them visitors. They are family.

"For families, that's a huge change. You are part of the team -- you are a team member. Rather than, 'Does this work for the system?' We ask, 'Is this what the family wants? ... What's their experience? What's their journey here?'" she said.

Families bring information that doctors and nurses don't know instinctively, and they know their child best, often alerting nurses to subtle changes, she said.

The concept of family-centered care is embedded in all areas of hospital care, with programs adjusted to address specific needs in cardiology and lung-, kidney- and liver-transplant programs, and many others, Wayman said.

Volunteers such as the Andersons bring their own experience and a level of comfort and confidence in helping new families adapt to the hospital setting, they said.

"We had two very intense encounters with the hospital," Arden said, noting his granddaughter's liver transplant and a fall that caused a subdural hematoma, or bleeding in the brain, in their 5-year-old grandson. The girl is now a happy, healthy high school sophomore, and the boy is now a graduate of the University of Oregon, he said.

As a family-care navigator in the pediatric intensive-care unit, Arden teaches parents the ins and outs of the ICU. He helps nurses locate parents and accompanies them to a child's bedside in the surgical recovery room.

"It's a continual relationship with them. I wear a big button that says 'Ask Me,'" he said.

An even more specific service -- the parent-mentor program -- puts parents new to the hospital experience together with a parent who has already "walked the walk," and it is being replicated in other hospitals, Wayman said. The mentors don't hand out advice but offer only the example of their experience and ask how the parents want different things to work for them, she said.

Problems such as how to coordinate and take care of other children in the family who are living and going to school three states away or how to handle coming to the hospital over a long period are experiences parents can share with other parents, she said.

"They are learning a new parenting role. There's not a lot of experience about parenting for an ill child. You're learning a new set of skills often in an alien environment: how to help your child through procedures; how to be in a hospital room for a long time," she said.

The hospital offers a variety of other services to families; Martzes have used many, from lactation consultants to an early-development counselor and social workers.

"They are helping you understand what is going on and help you to progress," Steve said.

Packard also provided a financial consultant to help the Martzes understand and gain control over their medical expenses.

"It's very easy for things to fall through the cracks" when all of the couple's energy is focused on helping Samuel survive, Stacey said.

Packard is also working to formalize programs to teach families care management, tracking medications and managing information among doctors, she said. Learning family self-management is a need when caring for kids with complex medical conditions as they return home, she said.

---

Every day at 9:08 p.m. Stacey and Steve Martz read a story to Samuel. It's the time when he was born.

The NICU has its rhythm of humming monitors, bells and nurses administering medications and adjusting machinery for the other preemies and infants with medical conditions. No one minds the couple. Stacey and Steve have been given more access to Samuel recently. Steve held Samuel for the first time and the couple has changed Samuel's diapers.

Stacey has held her child twice since his birth, bundled in a blanket that was hand made by senior volunteers and given to the couple as a gift.

She sat in a chair with Samuel nestled close to her chest. That bonding, the skin-to-skin contact, is important and therapeutic to mother and baby, doctors say.

"Hands down, it was the best day of my life," Stacey said.

Samuel's eyes open as his parents talk to him, and he looks in their direction. At 2 pounds and five ounces, his face and body have filled out some since he was born.

"He's tipping the scales," Stacey said.

But they still have a long way to go, the couple conceded.

Samuel won't be going home until he reaches the full nine-month gestation period -- until the due date in August.

"You live breath by breath," Stacey said.

Last week, a baby boy arrived in the NICU amid commotion. Nurses and doctors surrounded the child, hooking him up to machines.

"So many," Stacey said later that day on her blog.

She was scheduled to hold Samuel for only the second time, but it was clear that wouldn't be happening, as she watched the medical staff work feverishly over the infant. The child did not survive.

It was the second time that day the Martzes witnessed the death of someone's child, she said.

It's a sad reality in children's hospitals, even though the majority of newborns -- Packard had 4,574 deliveries last year -- go on to live healthy lives.

"I just got an email from a dear friend whose son was in the NICU in North Carolina last year and she talked about the trauma of seeing other babies not make it. It's something I will never, ever forget. My friend mentioned she has PTSD (post-traumatic stress disorder) and I'm positive I see signs of that in myself now. I dreamed of (the babies) over the weekend and continued to pray and feel a lot of sadness," she said.

On her way to the lactation consultant's office last week, Stacey passed the room where the complications that led to Samuel's early birth began.

"I will always be haunted by room F239. Lots of flashbacks that leave me feeling strangely, fearful," she said.

That reaction is common, said Nancy Contro, director of the Family Partners Program and bereavement services.

"Especially in oncology (cancer), a lot of families get close to each other. They feel fear when they see a child die who was diagnosed at the same time as their child," she said.

Social workers assigned to each family when they arrive help guide parents and children through the entirety of the life-and-death process, she said.

Social workers, chaplains and Packard's palliative-care division help families make care decisions. If the end time comes, programs are in place to help families through their grief.

"What I have learned is it's incredibly important that families don't feel completely cut off," Contro said.

When families leave the hospital, they often feel the loss of their hospital family and of people who understand them. In the world outside the hospital, neighbors, friends and school acquaintances don't know what to do or say, she said.

A relatively new Family Partners program brings together families who have gone through bereavement with newly grieving families.

The impact of a death also has a cumulative effect on staff members, who become tied to kids and their families, she said.

Staff members sometimes partake in memorial services at the hospital. They receive counseling and staff debriefings to help continue their emotionally demanding work, she said.

As a child goes in and out of phases and in and out of setbacks, palliative care can be used for years so that the child has the best possible quality of life, she said.

The ebb and flow of life -- and sometimes death -- within hospital walls has celebratory moments and setbacks. It is a hugely demanding experience physically, emotionally and financially, caregivers said. But the one consistent thread for everyone involved -- from parents and caregivers to counselors and the sick child -- is hope, Contro said.

"It's critical we let them maintain some level of hope. That's not to deny what's going on. ... They need something to get out of bed for in the morning. If you support their strengths, they will come around to the reality of where they need to be," she said.

In the face of difficult challenges, Stacey Martz said the couple is acutely aware of the fragility of life and the precarious nature of each moment.

"We held each other and looked down at our beautiful Sam, who continues to do so well, realizing how lucky we are despite the long road ahead," she said.

Related stories:

Bringing a new culture to hospital care

Milestones at Lucile Packard Children's Hospital

Comments

Posted by MidtownMom, a resident of Midtown
on May 27, 2011 at 12:43 pm

Having experienced their service/care - its an asset to have a hospital of such a caliber in the neighborhood .. keep up the good work guys!


Posted by Hulkamania, a resident of Duveneck/St. Francis
on May 27, 2011 at 6:13 pm

Packard is one of the best things to ever happen to this community. Give then whatever they ask for and add ten percent.


Posted by Camille, a resident of Charleston Gardens
on May 27, 2011 at 6:58 pm

Yay Sam! You're so photogenic, like mom and dad.


Posted by Too much traffic, a resident of Another Palo Alto neighborhood
on May 27, 2011 at 10:28 pm

Very timely article. Hard to believe that some people in palo alto, including some of our elected officials, seem to think that it is more important to keep a coupler extra cars off of our streets than it is to treat sick children properly.


Posted by Rose Bayly, a resident of another community
on May 29, 2011 at 7:01 pm

Having top-notch medical services in Palo Alto
is the reason there are
tender, heartwarming stories
as this. The services are worth every penny. Hats off to the hospital and staff.
And hats off to Sue Dremann, the reporter who wrote with such compassion.


Posted by Cynic, a resident of Another Palo Alto neighborhood
on Jun 1, 2011 at 11:46 pm

What's the point of keeping an extremely premature infant alive? It's exceeding expensive at the start. But quite likely the infant will grow into a special needs child that requires significant public expenditures throughout the childhood and beyond.

We are better off using all those resources to care for those without health insurance, to provide better prenatal care for healthier pregnancies and births, and to reduce the incidence of pregnant women using drugs and alcohol.

Sure it sounds heroic to keep a 2-pound infant alive. But at what cost? In most cases, the parents can try to have another baby. If not, adopt one already born.

Of course we should take care of sick children, and the Packard Children's Hospital does an admirable job. But much too much resources are spent on heroic measures for premature infants and for the elderly on their deathbeds.

No wonder the price of health insurance for the rest of us is going through the roof. How many tens of thousands of dollars do you think that heroic care is costing per week?


Posted by Kendra, a resident of another community
on Jun 3, 2011 at 10:10 pm

Dear Cynic, hopefully, you will not someday need any sort of 'heroic measure' or long term care to save your own life, but if that does happen, let's hope that you have the decency to not sap resources from other people by continuing your fight to live.

The baby was born alive, should the parents have just held their boy in their arms and done nothing, watch him die? Please, let us know who you are, and if you get run over by a car or otherwise injured, I would be most happy to apply your philosophy of care in that situation, and do nothing to help you. After all, you would not want all that costly medical attention for the rest of your life. I would save that for someone actually born with a soul.


Posted by Stacey Martz, a resident of East Palo Alto
on Jan 5, 2012 at 9:18 pm

Dear Cynic,

I wish I'd read your comment regarding this story sooner. I'm the mother of Samuel, the child this story is about. Alot, if not most preemies grow into perfectly healthy children with NO special needs at all. Our son is progressing beautifully. He's hitting all developmental milestones on time or early. He's going to do just great. His doctors and developmental specialists expect him to be a normal, healthy boy with NO special needs. It's sad to think that the joy of my life, my beautiful son, and so many others would be dead if it were up to you. Your knowledge of premature infancy is severely lacking, therefore, you should educate yourself before you speak of the silliness of keeping a 2 pound infant alive. The doctors that kept Sam alive will always be heroes in our book. Also, if you have children of your own, how much do you think their lives are worth? Should someone else get to make that determination when their lives are on the line? My son is worth every penny that was spent to get him through the rough patch of his beginnings. Again, educate yourself before you make broad statements about letting premature babies die. And grow a heart while you're at it.


Posted by Arden Anderson II, a resident of another community
on Mar 29, 2012 at 3:55 pm

My name is Arden Anderson II and it is my parents that are briefly mentioned in above article as volunteers. I have to commend Mrs. Martz for the restraint that she exhibited in her choice of words in her response to Cynic! Having just witnessed the birth of our first child (full term) and experienced the stress involved in that I cannot imagine what it would be like to be in the Martz's shoes. I am grateful for parents like mine and am so very proud of their generous donation of time and effort to help the families of the Packard children. Mrs. Martz, hang in there and hug Samual for my wife and me and don't give Cynic another thought.


Posted by Stacey Martz, a resident of East Palo Alto
on Jun 2, 2012 at 8:39 am

Arden, thanks for your kind words. I met your mother while Samuel was hospitalized. She was just lovely. I hope I some day have the time to contribute to LPCH like she does. What a blessing :)

Congratulations on the birth of your first child! You're in for a wild and wonderful ride!


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