A Baby With a Broken Heart
December 24, 2000

Story by JONATHON KING STAFF WRITER

It started with a raspy gurgle, a barely perceptible noise, bubbles of oxygen popping in a tiny chest only minutes old.

The sound wasn't unusual coming from a C-section baby. Without the squeeze from moving through the birth canal, such babies often need a touch of oxygen to help clear out the fluid.

"Let's just run him up to the NICU, let them check him out," someone said.

Michelle Feingold, a nurse and friend of the newborn's mother, was waiting for him.

For 14 years, Feingold has been an obstetrics nurse moving infants into the world and on June 3, she was doing the same for Spencer Crawford at Coral Springs Medical Center. But this one "just didn't look pink enough to me."

Once in her hands, Feingold slipped the baby under a Plexiglas hood and turned up the oxygen. His saturation levels barely rose. She turned it up all the way, but again the levels lagged. She checked the equipment. She checked Spencer's color.

She made a decision. She got on the phone.

"This kid's a cardiac. We've got to get an echocardiogram on him now," she said in a voice both confident and laced with alarm.

In the year 2000, medicine is full of such decisions. Technology and talent, knowledge and skill have made it so. Patients and doctors daily elect -- or decline -- to use a more expensive test, to go an extra step. Often the choices hold no effect. But sometimes the consequences tumble, like a line of dominoes set to falling. And sometimes the string is so long and complex, the clicking can go on for a lifetime.

When Spencer left his mother to go to intensive care, he was 7 pounds, 15 ounces and "beautiful," says Ellen Kaplan-Crawford, who kissed her new son's brow and watched a nurse carry him out.

Two hours later, a cardiologist was in her room, looking down at the floor, unable to look her in the eye.

"Don't tell me you have bad news," she pleaded.

The doctor told her and her husband, Chris, that their son had hypoplastic left heart syndrome, a congenital defect that leaves an underdeveloped left ventricle unable to pump oxygenated blood to the body.

"Then he told us Spencer probably wouldn't make it through the night."

A blessing unplanned

They are suburban folks. Chris Crawford is a patrol cop in Boynton Beach. Ellen was a nurse for 16 years before adding a law degree to her resume. They found each other on the Internet three years ago, and though they won't call their courtship whirlwind, they knew early that the match was good.

"We both wanted the stability of marriage, and we both wanted a family," says Ellen.

He was 29 when they married. She was 36. Their first son, Kyle, was born in 1998 with a calm disposition and a healthy heart. Spencer's birth, 15 months later, was unplanned but not unwanted.

"We considered ourselves blessed," Ellen says. "We still consider ourselves blessed."

But one day they were expectant parents, the next they were guardians of a baby with a failing heart. Hours after his birth, Spencer was flown from Coral Springs to Miami Children's Hospital. His newborn pinkness already was taking on a blue tinge.

In Miami, doctors confirmed a small and undeveloped left heart chamber and valves that were narrow or not formed at all. Arteries were withered. A hole spilled blood between the right and left collecting chambers.

Suddenly doctors were talking to Ellen and Chris about pulmonary shunts, controlled hypothermia, foramen ovales and a 50-50 chance of survival.

Before his birth, Spencer's crimped heart was hidden. But born into the world of air, a newborn's left heart takes over the job of pumping oxygenated blood.

Left undetected and untreated, newborns with HLHS, about 1,500 to 2,000 in the United States each year, live only five to 14 days.

"If Michelle had just let it go, Spencer would have gone straight to the nursery and that would have been it," says Ellen. "He would have died right there at Coral Springs."

Ellen says Feingold's decision allowed Spencer to live. Now she and Chris faced their own decision. At Miami Children's, there was an option of repairing what nature had left undone. Another domino was poised to fall.

The first steps

Though Ellen had a medical background, she had never heard of a Norwood procedure. Now it was supposed to save Spencer's life.

In the past five years, a team of Miami doctors has become adept at surgically jury-rigging the failing hearts of children born with Spencer's condition. On a heart no larger than a walnut, they attach the base of the lung artery to the thin body artery and improve the flow of oxygenated blood.

To get blood to the lungs, they insert a pulmonary shunt made of soft plastic.

To ensure the mix of oxygen-rich and circulated blood keeps flowing, they make a permanent passage between the left and right collecting chambers.

The Norwood is complicated and risky. And if it worked, six months later Spencer would need another operation to remove the plastic shunt and to sew his upper body vein directly onto his lung artery. When he was 5 years old, a third operation would build a wall in his heart to separate circulated blood from oxygenated blood.

"Three open-heart operations before he was even 6 years old," Chris remembers thinking. "How do you put a kid through that?"

The only other option was a transplant. More frightening. More risky. And more final.

"We decided that the Norwood was the way to go," Chris says. "If it didn't work, the transplant option was still open. You couldn't do it the other way around."

Before their son was prepped for the surgery, another decision. They agreed that if Spencer died on the table, his infant organs should be donated for transplant.

The surgery took 10 hours. Spencer was 3 days old.

When the surgeon came out of the operating room, he deemed the procedure a success. Ellen and Chris sighed their relief for the first time since the Coral Springs neurologist walked in with downcast eyes.

"Five years ago it wouldn't have been available; it couldn't have happened," says Chris.

Three weeks later, they took their son home. They began thinking about the future. But a surgeon's declaration of success can be a fickle thing. Even after you think you've won, the repercussions of decisions can continue to fall.

Life sucks

That's what the face said, tiny and pale, pinched and furrowed. He was 4 weeks old and miserable. Five weeks old and constantly irritated. Six weeks old and not a hint of a coo or sign of a smile.

"He was screaming all of the time," Chris says. "You'd try to comfort him, but you could tell he was just so uncomfortable."

Spencer went home to Boynton Beach, but it was a shaky homecoming.

"They just kept telling us it was colic, not to worry. But it was the hardest thing I've ever tried to do in the world, to console him and just not be able to do a thing," Chris says.

For five weeks they rocked, carried, bounced, fed and worried that the Norwood had been a bad bet.

On the first day of August, Ellen became concerned about Spencer's sweating (a sign that the heart is working very hard) and a reluctance to eat (because of a lack of energy and breathlessness).

"One of the nurses in Miami had told us that we'd know if there was trouble if there was a change in eating habits," Ellen says.

So the couple made a decision to drive down to Miami and have him checked out, "really just for peace of mind," Ellen says.

Doctors did an echocardiogram. The Norwood had not been enough -- the right side of Spencer's heart was working too hard. On Aug. 9, doctors at Miami Children's inserted a catheter into the baby's failing heart to keep him alive.

"But it wasn't a death sentence," Chris says. "They said there was still an option. The only one left."

Weighing options

The Crawfords knew little about transplantation.

"When they said it, all I could think about was the boy in the bubble," says Chris. "I could only envision Spencer having to be guarded from everything, every infection, every contact with the outside world.

"I couldn't see him with other children; I couldn't see him as normal."

A parent's first reaction is "to say yes, of course, we'll do anything to save our son," Ellen says. "But the people who know what transplantation is all about warn you to think deeper than that."

How does a family cope with a lifelong illness? What effect does the constant care of one child have on the other? What quality of life would Spencer have?

"I know this sounds weird, but I thought of him never being able to go to Disney World as a child, how unfair that would be," Ellen says.

They asked for a day to decide and stayed up all night, weighing alternatives, trying to see into a future, talking out each month, each birthday that might or might not come.

In the world of pediatric heart transplants, one in four children die waiting for donor organs. Twenty percent die within a year. Thirty percent won't make three years.

How much more devastated would they be if they bonded with their son another year, or longer, only to have the transplant fail? They couldn't decide.

The following afternoon, through a hospital contact, they got a glimpse of their future. A doctor introduced them to James Mitchell, a 7-year-old Boca Raton boy who for two years has lived with another child's heart as his own. James is a rambunctious second-grader who loves running and basketball, a kid who tumbles and teases with his four siblings. A kid who has been to Disney World.

Elizabeth and Bill Mitchell had three healthy children when James was born with congenital heart disease. They had been in Ellen and Chris' shoes. They knew the questions that were rattling in their heads. But they also had walking, talking proof of their own decision.

"We told them the truth, that it wasn't going to be an easy road, that you work with it every day. The choice was theirs. You can't say what happened to us would happen to them, but seeing what's possible can sometimes make a difference," says Elizabeth, whose son still takes seven medicines a day and wears a pacemaker. "When they saw James, how healthy and happy and well-adjusted he was, we could tell they were relieved."

That night Ellen and Chris agreed to the transplant. They wanted to give their son a chance.

"At one point, my mother asked me if we weren't making our decision because we just weren't ready to let Spencer go," says Ellen. "I admit that was part of it. I didn't want to lose him."

On Aug. 12, Spencer was flown to All Children's Hospital in St. Petersburg, a medical center with a strong reputation for pediatric heart transplants. Two days later, he went on the priority list for a heart, a difficult and precarious benchmark to reach, and a jumbled, emotional place for a parent to be.

"The waiting is very hard, because you feel so helpless," Ellen says. "As soon as we got him on the list, we felt we gave up control. There's nothing else you can do but wait and hope."

Wait and hope. They are not ephemeral words in the world of transplant medicine. The average wait for a child at All Children's to find a heart match is one month. But only one in four children with HLHS find donors.

"We were keeping him alive, but you're talking about a matter of time," says Dr. James Quintessenza, the transplant surgeon at All Children's. "For 12 weeks of his life he had been living on two pumps instead of the normal three. He was simply going to run out of gas."

For 18 hours a day, Ellen stayed at the hospital, sitting by Spencer's bedside, talking and stroking, sponge bathing and giving some of his medications. She continued to breast-feed and when Spencer was not strong or willing enough, she pumped her breast milk to feed him through a tube threaded up his nose and down into his stomach. Chris stayed for days at a time, and then would drive back across the state to work. He had to keep his job -- it provided the health insurance that helped pay to keep his son in critical care. They'd been told that the average first-year cost of a heart transplant is $253,200. Follow-up care can run an average of $21,200 a year in medications and checkups.

Their son was dying. They were waiting for a phone call. Ellen kept a beeper clipped to her pajamas. She concedes she is not a patient person. She concedes she is unsettled by the very process.

"You're hopeful, but you also can't help thinking that someone else is going to have to go through a tragedy for you to have a chance," Ellen says.

Waiting is acknowledged by all involved to be the hardest part.

"Yes, there are medical challenges and we face those in a clinical way," says Dr. Robert Boucek, the head of the transplant unit at All Children's. "But the real challenge is keeping Spencer and his family all glued together while we're waiting."

The clock ticks ...

At 8 p.m. on Aug. 29, pagers go off.

A child's heart is available. The blood type is B-positive, the same as Spencer's.

Drs. Boucek and Quintessenza have one hour to make a decision. The donor is about 1,000 miles away, which makes timing tight. They gather as much information as they can: The condition of the heart, the size, the kinds of medical procedures -- including the drugs -- used on the donor child.

If they don't accept the heart, the alert goes to the next name on the United Network for Organ Sharing's computerized match list. A hospital in Michigan has already rejected this heart.

"You find out as much as you can. But the clock is already ticking," says Boucek.

He and Quintessenza want it. The hospital's medical recovery team scrambles to a Learjet. They will be in constant contact with the donor hospital, where surgeons will keep the deceased child's heart circulating until they arrive. Once that heart is unhooked, they have four hours to fly it to St. Petersburg to be sewn into Spencer's chest.

Decision made, a nurse walks to Spencer's room, where Ellen has been holding her 18-hour vigils for 17 days. It's a Tuesday and by coincidence, Chris has arrived from Boynton Beach. They're at their son's bedside, all three holding each other's hands and reciting the Novena of Urgent Need to the Infant Jesus.

At 9:22, the nurse opens the door: "Guess what? You're getting a heart."

"I think we were kind of stunned," Ellen says. "Then we just kept saying to each other `We're getting a heart. We're getting a heart. We're getting a heart.'"

The waiting switches from watching the calendar to watching the clock. Now decisions will be made by doctors.

... and ticks

At 6 a.m., the All Children's team arrives at the donor's hospital. A heart the size of a plum is taken from what is now considered a cadaver in medical terms. The team packs the heart in ice, loads it into a blue-and-white cooler and heads back to their Learjet. About the same time, Spencer is being prepared for surgery. His body is chilled to slow its functions. At some point, his blood will be drained, and only a heart-and-lung machine will keep him alive.

Modern medicine and communications make possible the impossible. "Technology is a wonderful thing, but it is still run by humans," says Boucek. "And humans are going to make mistakes. Things are going to happen beyond your control."

Through the night, the surgeons set their plans. At 7:45 a.m., Dr. Quintessenza makes a decision to begin Spencer's surgery 30 minutes before the Lear has landed in St. Petersburg.

"We usually don't like to do that," he says. "We usually want the heart here, in the hospital, before we begin, but we were really working on a tight schedule."

Boucek knows too well that even at this point crushing blunders can be made. He recalls a Lear dispatched to South America that blew out a tire on a remote runway -- the heart it carried was lost by the delay. He remembers an organ being transported by an ambulance driver who got lost, drove around town for an hour and arrived too late.

But at 8:20 a.m., the transplant team hustles through the halls of All Children's with the heart. Ellen and Chris are in the corridor. With a camcorder, they videotape the blue-and-white cooler as it passes.

On the table, Spencer lies covered in light green sterile drapes, a small mound surrounded by beeping and blinking machines. A ventilator tube trails from his mouth, IV lines are plugged into his tiny body. He is not yet 13 weeks old, and his soft breastbone has been cracked open for the second time. This time the defective heart he was born with is taken out. The heart of another child is fitted into his chest and sewn in.

Later Quintessenza will downplay the surgical expertise and pure talent it takes to perform such a feat.

"The sewing part is not that difficult," he says. "The emotional part is much more complex. By its very nature, you've got the tragedy at one end and the miracle at the other."

The surgery to reconnect Spencer's new heart takes one hour and 10 minutes. Once the connections are made, Quintessenza reaches the point of no return.

"The last thing you do is take the cross clamp off the aorta and Spencer's blood begins to flow," he says. "He's gotta fly on his own then. If it's going to work, it has to work then."

At 10:30 a.m., the cross clamp is removed. It has been four hours and 23 minutes since the heart was unhooked from a dead child's chest. Now the blood of a dying child begins to surge through it.

Several corridors away, Ellen and Chris are in a small family conference room, sitting together on a couch, smiling, tired, fidgeting. Their faces are soft with exhaustion, but no one passes the open doorway without both looking up in expectation. They have been up for nearly 30 hours.

"I don't know. It's just so ... so surreal," Ellen says, trying to sort out the past few days, the last several hours. "It was moving so slow. Now, it's like we just got here yesterday."

She checks her watch for the third time in five minutes. She leafs through the daybook where she has recorded every significant event of the past three months. She recalls a prayer she and Chris had been reciting when word of the donor heart came in. They clutch to any sign that the decisions they made have been right.

At 11 a.m., Dr. Quintessenza walks through the door: "The new heart is beating on its own. Everything looks good."

Ellen begins to ask a technical question, then stops herself, smiles and hugs her husband. Then she stands and beams at the surgeon.

"Can I give you a hug?"

"Of course."

"Spencer's got a heart," she says.

"Indeed he does."

A sigh of relief

Two hours after surgery, Spencer lies in the pediatric intensive care unit, dwarfed by a stack of electronic monitors behind him. A green pulsing line marks the beat of his new heart. A white line shows his blood pressure. Yellow measures pressure in the left atrial chamber, blue measures the right. The purple line shows his respiration rate.

"I can't believe his color," Ellen says for the third time in the hour she's been standing at his bedside. "He's never looked so pink. I mean, he hasn't looked this pink since the day he was born."

The baby has lost the blue tinge that has shadowed his skin since minutes after his birth. His response to the surgery is encouraging. A pacemaker is hooked up to the new heart muscle. It prompts the heart to beat if it falls below a set limit. By late in the day, it rarely kicks in.

That night Chris is out "the second my head hit the pillow." Ellen sleeps without anxiety for the first time in months. Yet, by 6 a.m. she is back at her baby's bedside, cooing in a mother's distinctive high-pitched voice. The dark circles are gone from her eyes. A smile dominates her face. She looks up at every new visitor to Spencer's room.

"When I said his name, he opened his eyes," she tells each one.

At lunch Ellen pulls out her daybook, jots some notes, and asks Chris if he wants to read something special she has written that morning. She passes him the notebook and inside is a draft of a letter:

To our donor family ...

Please know that every time we hear our son's heartbeat we will be thinking of you and your child. ... Find some comfort in knowing that your child lives on through the hopes and dreams of ours.

"We can send it to them later. I just wanted to get it down. How grateful we are," Ellen says to her husband.

"It's very nice," Chris says.

Within two days, Spencer is aware and hungry for any adult face that comes close. The ventilator that helped him breathe is no longer needed. Nurses begin to "reduce the spaghetti" of lines and monitors. Six days after the transplant, Ellen holds her baby for the first time since surgery. On the 10th night of his new life, she pulls up the rails on his bed and sleeps in the hospital bed with her child, curling around him, dusting his brow and hands with her fingertips.

All the decisions have been worth this moment.

The battle begins

Rejection is now Spencer's enemy. The cellular warriors in the boy's body will perceive his new heart as a foreign threat. His immune system will try to kill it. For now, and perhaps forever, he will have to take immunosuppression drugs to keep his system from destroying his new heart.

For the first few weeks out of the hospital, Ellen and Chris will be responsible for giving those medications: 10 kinds at 8 a.m., six more at 4 p.m., three at 8 p.m. and six more at midnight.

Chris has had to learn how to thread the gastrointestinal tube up through his son's nose and down into his stomach. "Never in a million years would I have seen myself doing that," he says. "But you do what you have to do."

And again they go over the rules and procedures of infant CPR. Five breaths over his tiny mouth and nostrils for each compression of his chest -- a chest now scarred from his throat almost to his belly button.

They are told to watch for an increased or irregular heart rate, to note any fever over 100.4 degrees, to pay close attention to irritability or disinterest in eating.

They are warned against taking the baby to restaurants, supermarkets, the pediatrician's waiting room or other places where he will be exposed to other sick people. For the first few months, visitors to their home should still wear masks, especially if they have any hint of colds.

"If he even gets exposed to chickenpox, call us right away."

It is the "boy in the bubble" that Chris feared the first time he heard the word transplant.

"Is he allowed to go outside?" Chris asks. "I mean, can he be in the sun?"

Transplant coordinator Darleen Smith smiles and seems to realize she has pushed the Crawfords too far in explaining all the hard details.

"I'm sorry. Yes. We want him to go outside. We want him to get dirt on his hands, to play with other children. We don't want him to be a boy in a bubble," Smith says. "Spencer is going to want to play. He's going to want to kiss Kyle, and Kyle's going to want to touch him, and we want them to do that. It's a quality of life issue, and we don't want you to take that away."

Chris and Ellen simultaneously take a breath, seem to sigh a shared relief.

"So, on his first birthday we can have a party?" Ellen finally asks.

"Yes. He can have a party."

;A happy departure

On Monday, Sept. 11, Spencer is released from All Children's, 12 days after a new heart was put in his chest, 14 weeks after he was born with a death sentence.

The monitors are off. The lines are out except for the naso-gastrointestinal tube that must still be used to supplement his feeding. He is sucking on a pacifier, his wide eyes taking in everything in the room that moves. He smiles with uninhibited joy any time a pair of smiling eyes engage him from above the sterile masks visitors must still wear in his presence.

"He is like a different child," Ellen keeps repeating. "Before he was always crying with his face all scrunched up and his brow always furrowed."

"That `life sucks' kind of look," Chris breaks in.

"Now," Ellen says, "He just looks ... like he looks."

In Spencer's hospital room, Ellen and Chris are packing up medications and thermometers, bagging extra diapers and alcohol swabs, fidgeting as they wait for Boucek to approve Spencer's discharge.

From the beginning, Ellen's nursing background has been an advantage. She knows the language of oxygen saturation rates and atrial pressures. She has an easy familiarity with syringes and metric measurements. Still, she confesses: "I'm a little scared right now."

There is an overwhelming chance that Spencer will show some sign of rejection in the first three months after the transplant. The human body is too complex, too finely tuned and sophisticated to be completely fooled by medicine.

But rejection does not mean death. It only means setback. Medications may have to be increased, cyclosporin levels brought back up. After his first three months, the chance of rejection will fall from 80 percent to 20 percent. The 20 percent risk will remain for the rest of his life.

Back in Spencer's hospital room, Boucek gives Spencer a final check.

"Let me listen to your new model," he says, putting his stethoscope to the baby's scarred chest. He goes over a thick pad of paperwork, runs a finger down a column of figures, asks a final question of the staff nurse.

"OK," he says. "You're outta here."

In the hallway a small crowd of ICU nurses gathers. Photos are taken. Spencer rides out in a car seat, carried by his father, out into natural air that he has not drawn a clear breath on in his short and troubled life. His eyes are wide and full. The sky so big, the buildings unimaginable, the warm, unconditioned air foreign as they walk three blocks to the Ronald McDonald House where the family will live for the next two weeks. Since Spencer will need to be brought in for checkups twice a week, the family's return to their Boynton Beach home is delayed. Yet, this night, it doesn't diminish the huge step being taken by a family that has been on an emotional roller coaster for four months.

"It's like bringing a newborn home for the first time," Ellen says. "But I'd be lying if I said I wasn't a little nervous."

Clearing hurdles

It started with a tiny yawn, lips forming a small O, eyes fluttering closed, and for the first time in his six months of life, Spencer slept through the night. His mother woke at 2:30 a.m., disturbed by the unfamiliar quiet. She checked on the baby, and decided to let him sleep.

"Last night was the best night of his life," Ellen says as she stands in her Boynton Beach kitchen on a mid-November morning. "But when I woke up and didn't hear him, it scared me."

The decision to release Spencer from All Children's was not an end to the falling dominoes. The baby has been back to the St. Petersburg hospital several times: his hypertension soared, his blood pressure dropped dangerously low, his respiration became odd and labored -- all signs of organ rejection.

In late October, surgeons had to thread a catheter through the carotid artery in the baby's neck to widen a pinched aortic arch that threatened his blood flow.

"I don't think we thought about the road ahead, how rough it would be," says Chris, bouncing Spencer in an infant seat while Kyle reaches to touch his brother.

But as they face the setbacks, the stack of medical bills and the uncertainty that each night brings, neither parent questions the decisions made.

"You get frustrated. You get tired. You get overwhelmed. And then you look at his smiling face and you do whatever it takes," Ellen says. "With the changes in science and the improvements in medicine that come through every day, he might outlive us all."

Jonathon King can be reached at jking@sun-sentinel.com or 954-356-4691.

Publication Date: Sunday, December 24, 2000 Edition: Broward Metro

Section: NATIONAL Page: 1A

Memo: Informational box at end of text.

Publication: SOUTH FLORIDA SUN-SENTINEL

Illustration: PHOTOS 17 Caption: Photos by SUSAN STOCKER STAFF PHOTOGRAPHER

(color) WELCOME: Spencer Crawford was born at Coral Springs Medical Center this summer with hypoplastic left heart syndrome, a defect that left him with half a heart. (color) A RISKY OPTION: Spencer's damaged heart, minutes after it was removed from his tiny chest during a transplant to save him.

DECISIONS: Ellen and Chris Crawford, knowing that their choices come with deep consequences, consult with doctors before giving their consent to yet another surgical procedure for Spencer.

POST-OPERATION: A pediatric intensive care nurse checks Spencer's monitors while he recovers at All Children's Hospital in St. Petersburg.

ANOTHER CHANCE: Spencer's new heart is implanted by Dr. James Quintessenza, a transplant surgeon at All Children's.

SURGEON'S UPDATE: After 30 sleepless hours, Ellen anxiously awaits word from Dr. James Quintessenza at All Children's Hospital in St. Petersburg. When the doctor reports that Spencer's new heart is beating on its own, she hugs the man who saved her baby's life.

SHARING THE NEWS: After the transplant, Ellen calls her mother in Boynton Beach to give her the good news as her exhausted husband, Chris, sits at her side.

PATIENT VISIT: After the transplant, Chris checks on Spencer, who is dwarfed by the pediatric bed and the bank of medical machinery that monitors his new heart.

MEDICATIONS: Spencer lies in his hospital bed next to 10 different drugs, including immunosuppressants, which keep his body form attacking his new heart. He will need to take immunosuppression drugs for the rest of his life.

PREPARING TO LEAVE: Spencer Crawford waits patiently to be discharged from All Children's Hospital in St. Petersburg, 12 days after receiving a new heart, as his mother, Ellen Kaplan-Crawford, finishes paperwork. Moving closer to home

STAYING NEARBY: Ellen and her husband, Chris, carry Spencer to the Ronald McDonald House, where they will live for two weeks so Spencer can return to the hospital for regular checkups.

FIRST NIGHT: After the Ronald McDonald House, above, Chris changes Spencer into his pajamas as the family prepares to spend their first night together away from the hospital. "It's like bringing a newborn home for the first time," Ellen said.

LULLABY: Ellen and Chris comfort Spencer in his crib, at left, at the Ronald McDonald House during the baby's first night out of the hopsital, 14 weeks after he was born with a death sentence. Back home again, at last

HOMECOMING: On Spencer's first night home in Boynton Beach, an exhausted Ellen tries to rock her wide-eyed son to sleep. "He might outlive us all," she said. Keywords: BABY HEALTH MEDICAL PROCEDURE ORGAN TRANSPLANT

Box: HOW TO HELP A trust account for the health and welfare of Spencer Ryan Crawford has been set up through First Union National Bank. Charitable gifts will be handled by Ian Berkowitz, Esquire, 561-447-4044.

Information on organ transplantation is available at the United Network for Organ Sharing at 888-894-6361 and www.unos.org.