“There’s not much that Nicholas can’t do,” his mom, Patti Capano, 36, says brightly. Except walk, swallow, and breathe.

Born with spina bifida, a condition in which the spinal cord is not enclosed within the backbone, Nicholas, 9, a third grader in Lynn, needs a weelchair to get around, a ventilator to breathe and tubes to get food to his stomach.

And when the occasional complication lands him in New England Medical Center – as an infection and surgery have for the last two weeks – he’s “a brave little kid,” she adds proudly.

So are his brothers, Alexander, 7, and Jonathan, 4. If their mother has to spend the night in the hospital, their father, Mario, 40, a lawyer, takes the home shift. “They have always slept in their own beds,” she says. “They’ve always had a goodnight kiss and a good morning kiss from their dad.”

Sure, Nicholas’ disability has had a “great impact” on the family, adds his dad. But by “great,” he means it’s made the other kids “more caring. . .more mature. Nick is a blessing.”

Nearly 7 million American children have a serious medical illness or disability such as diabetes, cancer or head injury, according to recent congressional testimony. And the need to devote family resources, both emotional and economic, to their care clearly has a huge effect on parents and healthy siblings.

But while growing up with a sick brother or sister can put siblings at higher risk of anxiety and other problems, it can indeed make them more mature and empathic, says Suzanne Bennett Johnson, a psychologist at the University of Florida. “It isn’t necessarily all bad.”

It certainly wasn’t for Rachel Cobb, now 24 and a researcher at Cambridge Community Services, a social service agency. Rachel was 2 when her brother Ethan was born. Ethan’s troubles, including a severe communication disorder and for a while, hyperactivity, “snuck up on all of us,” says their mother, Poly, a Cambridge resident and advocate for people with disabilities. But her attitude was, “Okay, we’ve got this thing. Too bad. It is too bad. . . It changed the world for us, but it is not the end of the world.”

“I never felt jealous or abandoned or upset,” adds Rachel. “I was very aware of how different he was and that that was not necessarily liked by the real world.” But she was a full participant in Ethan’s care: “That made a big difference.”

The experts agree.

“There’s almost always something a sibling can do” to help a sick brother or sister, says Dr. James Perrin, director of general pediatrics at Massachusetts General Hospital.

Even something as simple as reading aloud, fixing food, or bringing assignments home from school can benefit healthy siblings tremendously. Not only does it offset the abandonment some siblings experience as parents focus on the ill child, he says, but it builds competence and helps “combat the powerlessness” many healthy kids feel.

Still, there are limits. When it’s a younger sibling who’s sick, the “big danger,” says Alexandra Quittner, an Indiana University psychologist, is that the older child may “take on more responsibility than they should. . .especially if that child is a female.”

The idea “is to be engaging, not exploitative,” says Gerry Koocher, chief psychologist at Children’s Hospital in Boston, a balancing act parents can aim for with statements like, “Would you like to be helpful in something I need to do for your brother or sister? You don’t have to do it, but it would be helpful.”

Staying sensitive to a child’s complicated feelings – from anger and jealousy that parents spend so much time with the other sibling to guilt, often indirectly expressed, that their own bad thoughts or deeds caused a sibling’s illness – is key.

This holds even in situations where parents might assume the healthy child is doing fine because she has been so heroic – doing something like donating bone marrow to a sibling with leukemia.

In a study of 44 kids published in Developmental and Behavioral Pediatrics last summer, Dr. Wendy Packman, a psychologist at the University of California at San Francisco Medical Center, found – to her surprise – that siblings who donated marrow wound up, regardless of age, more anxious and with poorer self-esteem than siblings from similar families who were not donors.

The donors had “a constant fear or dread that the brother’s or sister’s disease might return. . . that their bone marrow wasn’t good enough,” says Packman, even though at school the donors showed more “leadership skills and social competence.”

And although many healthy siblings do fine psychologically, some research supports parents’ concern that the time demands and emotional stress of caring for a sick child can leave their other children relatively deprived.

Quittner has found that mothers think they give their children equal attention but the healthier child often winds up with less.

Still, there are ways to give healthy siblings what they need, says Sister Clare Walsh, director of pastoral care at NEMC’s Floating Hospital for Children.  Like a growing number of hospitals, Floating runs a special program for siblings of sick kids, called VIBS – Very Important Brothers and Sisters.

If one child is hospitalized, Walsh says, parents can “at least have contact by phone” with kids left with relatives. Whenever possible, it also helps – except during flu season – for healthy kids to go to the hospital to see what goes on.

Most important, says San Diego psychologist Pat Deasy-Spinetta, who has studied families of chronically ill children for 30 years, is to keep healthy kids in the loop. If you do, she says, “over the long haul, kids will come out okay.” In fact, she adds, many siblings of chronically ill children go on to medical or nursing school.

Keeping everybody part of the team has clearly worked for the Capano family. Patti Capano puts it this way: “All three of my children are the nucleus of the family.”

How to help siblings

1. Assume the healthy child may be jealous of the sick one, may fear getting sick herself, may feel her own thoughts or deeds caused the illness, and may feel excluded.
2. Explain to the healthy child – in age-appropriate language and as often as necessary – what is wrong with the other child, emphasizing that the illness or disability is no one’s fault.
3. Consider taking the healthy child for a doctor’s exam if she seems worried that she, too, has a serious disease.
4. Encourage her normal activities – school, parties, sports – and give her acclaim for her strengths and achievements.
5. Recognize that hozpitalizations can be traumatic for both sick and healthy siblings. Encourage visits. But don’t force the healthy child to touch the sick one, and prepare her to see her sibling surrounded by equipment like tubes and needles.
6. If you can’t take care of the healthy child yourself, tell her where she will sleep, who will feed her and take her to school or day care. Call often if you can’t be with her.
7. Be honest if she asks how long her sibling will be hospitalized. If she doesn’t worry aloud her sibling might die, you can raise the subject, saying, “I bet you’ve been thinking about that.” And answer truthfully: “We don’t know, but we’re trying to find out. It’s okay to be scared – we all are.”
8. Be realistic. It’s unfair, for instance, to expect a healthy child to waken a sick one from a coma.
9. Without being exploitative, include a healthy child in the care of the sick one. For little ones, this may mean sending a drawing to the hospital or choosing a photo for parents to take in. For older kids, it may mean entertaining the sick child and sometimes, helping with hands-on care.
10. Use “people first” language to keep the child, not the disease, front and center. Don’t say, “Johnny is asthmatic.” Instead, say, “Johnny has asthma.”
    

It’s hard to imagine anyone better equipped to make a complex medical decision than Dr. Mary Catherine Raugust Howell.

Howell, a pediatrician, was associate dean for student affairs at Harvard Medical School in the early 1970s, the first woman to hold such a post there. She was also a psychologist and a lawyer, earning a juris doctor from Harvard at age 59.

She seemed to have everything to live for, including seven kids, a wide circle of friends – many of them high-achieving, Renaissance women like herself – and a passion for chamber music, which she played with friends five nights a week.

Yet when Howell discovered a lump in her breast, she chose to take no action at all, not even a mammogram or biopsy. By the time she consulted a friend, Dr. Roxanne Cumming, 4 1/2 years ago, the lump was “as big as a walnut and rock hard,” says Cumming.

It was obvious, Cumming says, that the lump “could not have been anything other than breast cancer,” and Howell figured, at least at that point, that treatment would not prolong her life.

Howell lay dying last week, having kept both her cancer and her decision not to treat it secret from all but a few friends.

Her decision will strike many as shocking, for many cancers can now be successfully treated, especially if caught early. In fact, according to 1998 figures from the American Cancer Society, the overall death rate from cancer fell 2.6 percent between 1991 and 1995, the first sustained decline since the 1930s. For breast cancer detected in early stages, current treatments cure 60 to 90 percent of women.

But controversial as Howell’s choice may be, it is a potent example of the self-determination that is every patient’s right.

Granted, no one knows how many of the 1.2 million Americans diagnosed with cancer this year will refuse conventional treatment – out of despair, fear of side effects, or a rational assessment of the facts. But Howell is clearly not alone.

Rozsi Moser, for instance, a 42-year old Watertown woman who manages the Newbury Guest House in Boston, was diganosed with Hodgkin’s lymphoma at age 35.

Even when Hodgkin’s is advanced, more than 50 percent of people are cured, says Dr. Michaele Christian, associate director of the cancer therapy evaluation program at the National Cancer Institute.

But to her doctors’ dismay, Moser declined treatment. She had watched her mother die of cervical cancer and felt the doctors had “killed her” with chemotherapy. Whether that was true or not, when Moser got cancer, she felt “more afraid of the treatment than I was of the cancer, and I still am.”

She did agree to surgery remove a swollen lymph node, then threw herself into Zen Buddhism. She did well until two years ago when her cancer worsened and she finally consented to a few rounds of chemo. “I quit halfway through. . . I couldn’t take it anymore,” she says, though she feels fine now.

For every case like Howell’s or Moser’s, of course, there are thousands, perhaps millions, who choose conventional treatment, increasingly with complementary therapy such as acupuncture, herbs or meditation. And many are glad they did.

Ellen Labb, now 35 and a student at the Harvard School of Public Health, has had both Hodgkin’s disease and breast cancer, the treatment for the first perhaps a cause of the second.

Though she knew all too well what the tools of Western medicine can do, for good and ill, she plunged into breast cancer treatment. “I was too afraid not to do it,” she says. “That was my chance to live.”

For doctors, a patient’s right to refuse treatment creates a complex duty to respect that right but still to probe for hidden despair and to argue in favor of any treatment that, though rugged in the short term, is likely in the longterm to improve the quality or quantity of life.

That’s just what Howell’s doctors feel they did.

“I didn’t totally understand her decision, but I respected it” even when that meant trying “to protect her from the medical profession,” says Dr. Catherine DuBeau, who took over Howell’s care last year after Cumming moved away.

Often, when people newly diagnosed with cancer refuse treatment, “it’s a control issue,” says Dr. Jack Evjy, a medical oncologist and a member of the board of directors of the New England division of the American Cancer Society. In his Methuen practice, Evjy says he sees several patients a year who decide against the traditional options.

Some “want to do the things they’re used to doing, at least for a while, then have it over with, rather than going through the potential loss of body parts from treatment and its side effects,” he says.

Others feel fine and dread being – and looking – sick from chemo, even though lost hair grows back, nausea can be offset with drugs like Zofran and marijuana, and drugs like G-CSF enable the immune system to recover faster from the damaging effects of therapy.

Still others refuse treatment because they’re too depressed to think clearly.

“I don’t believe in atomic warfare in the oncology clinic,” says Dr. Jerome Groopman, chief of experimental medicine at Beth Israel Deaconess Medical Center. But if someone has a cancer that “could potentially be cured or put into prolonged remission and that person tells me they don’t want to do anything, I worry about the psychological dynamics.”

Sometimes, of course, saying no – at least for the moment – may be a rational choice. With prostate cancer, for instance, the potential side effects of surgery – incontinence and impotence – can outweigh the risk of a slow-growing cancer, says Dr. David Rosenthal, president of the American Cancer Society and head of Harvard University Health Services.

And some doctors, perhaps especially holistic physicians like Dr. John Borduik of Spectrum Medical Arts in Arlington, are sympathetic to patients who refuse treatment.

Borduik, who says a third to a half of his patients opt against conventional therapy, believes his job is to “optimize the quality” of patients’ lives and support their decisions.

Carol Allwell, a 49-year-old acupunturist from Newport, R.I., agrees. “I am a holistic practitioner,” she says, “but you have to weigh where you are at.” Diagnosed last year with ovarian cancer and given three weeks to live, she felt her “best shot was to take chemo to give me time to do other things.” Now in remission, she feels that “chemo bought me time, for sure.”

In all such decisions, says Howell’s friend and doctor, Roxanne Cumming, the key is this: “You and I don’t know what decisions we would make until it’s our time. We have to hope that whoever is taking care of us will respect our decisions.”

Previous “Health Sense” columns are available through the Globe Online searchable archives at http://www.boston.com. Use the keyword columnists and then click on Judy Foreman’s name.

 

If a government advisory panel gives the high sign, an unusual product may soon hit the medical marketplace: skin-like tissue made from human foreskins.

The tissue, donated by mothers who had already decided to have their babies circumcised, could be a boon to people with unhealed wounds such as skin ulcers caused by damaged leg veins.

But marketing foreskin-based products may throw more fuel on an already fiery debate – whether circumcision, the surgical removal of the foreskin of the penis, is medically justifiable. To the more ferocious circumcision opponents, the profit motive behind development of foreskin-based medical products makes circumcision more sinister yet.

Among Jews, circumcision is as ancient as Abraham – 4,000 years old. As written in Genesis 17, it is not a health practice but a sign of the covenant with God, says Dr. Robert Levenson, a pediatrician at Harvard Pilgrim Health Care in Wellesley and a mohel, a person who performs ritual circumcisions on Jewish boys when they are eight days old.

It is also an old tradition among Muslims, though it’s often eschewed by Hispanics and blacks.

But for many of the American boys circumcised every year – as about 60 percent of newborn males are – the five-minute surgery is done not for religious reasons but because parents and doctors think it’s the medically enlightened thing to do.

Is it? The honest answer is: Nobody knows.

Consider the flip-flopping of the American Academy of Pediatrics. In 1971, it said there were “no valid medical indications for circumcision.” In 1975, it said there was “no absolute medical indication.”

In the next few years, researchers published a series of studies suggesting that boys who had been circumcised had a lower risk of urinary tract infections, fewer sexually transmitted diseases, less penile cancer and perhaps that their female partners were less likely to get cervical cancer. That evidence prompted the academy, in 1989, to conclude there were “possible medical benefits” to circumcision after all.

Since then, there have been even more studies, prompting yet another review by the academy, this one headed by Dr. Carole Lannon, associate professor of pediatrics and internal medicine at the University of North Carolina at Chapel Hill.

Lannon won’t say how the academy will tilt when its report comes out later this year. But no matter what it says, the report is unlikely to settle things because of the intense emotions swirling around the circumcision debate.

Dr. Thomas Wiswell, a neonatologist at Thomas Jefferson University Medical School in Philadelphia, argues that circumcision prevents urinary tract infections, with circumcised boys having 10 to 30 times less risk. Some data suggest it also reduces the risk of sexually transmitted diseases, though last year a study of more than 1,400 men found no such benefit.

 Wiswell’s views have made him such a target of circumcision foes that he has to register at hotels under false names at conferences.

“When I lived in D.C.,” he says, “I had police detectives come to the hospital looking for me because the anti-circumcision people called and said there was a guy named Wiswell mutilating genitalia.” Such fervor, he says, “borders on fanaticism.”

That’s not how circumcision opponents see it. They say removal of the foreskin is barbaric, unnecessary, unnatural, unjustifiable, and harmful, physically and psychologically.

“The US is the only country in the world that circumcises most male infants for nonreligious reasons,” says Ronald Goldman, a psychologist who heads the Circumcision Resource Center in Boston and has written two books on the subject. “It’s hard to believe how strong the case against circumcision is because we have been conditioned culturally to believe circumcision is a good thing or at worst, harmless.”

In fact, there is evidence of circumcision’s harm.

One study of 87 infants published last March in the journal Lancet showed that circumcised infants who received no anesthesia had a stronger response to subsequent routine vaccination than uncircumcised infants or those who were circumcised but received a pain-dampening cream called EMLA.

Another study of 52 healthy infants, published in December in the Journal of the American Medical Association, showed that unanesthetized infants showed more distress during circumcision.  The most effective anesthesia, the study found, was a ring block – a circle of injections of lidocaine, a painkiller, halfway down the penis. The next most effective was an injection in the groin on each side. Least effective was EMLA.

The message, says Janice Lander, the University of Alberta psychologist who led the study, is that “under no circumstances should babies have circumcision without anesthesia.”

But Levenson, the mohel and pediatrician, argues that injections are “an inappropriate, difficult, cumbersome, and anxiety-provoking procedure to do in person’s home where you are performing a lofty and celebratory ritual, especially when EMLA cream, though not perfect, does reduce pain in my opinion by 75 to 80 percent.”

But try telling that to circumcision foes, especially in the wake of a recent article in Mothering magazine by circumcision opponent Dr. Paul M. Fleiss, a Los Angeles pediatrician.

Fleiss, the father of Hollywood madam Heidi Fleiss (now in prison for laudering her call-girl profits), extolls the virtues of the foreskin, including its role in sexual pleasure.

“The only time circumcision is necessary,” Fleiss added in a telephone interview, “is if somone has forcibly retracted the foreskin on a newborn. Then a scar forms and sometimes that scar is so tight there has to be surgery to remove it.”

In the article, Fleiss (who pled guilty to making false statements to a bank), contended “the marketing of purloined baby foreskins is a multimillion-dollar-a-year industry.”

Those working on foreskin-based skin substitutes, among them Dr. William H. Eaglstein, chairman of the dermatology department at the University of Miami School of Medicine in Florida, strenuously deny such charges.

So what does the circumcision decision boil down to?

The rule of thumb for Dr. Michael O’Leary, a Brigham and Women’s Hospital urologist, is, “if the dad is circumcised, the son should be” because boys want to look like their fathers.

Whatever you decide, do it mind early, “not sitting there in the hospital still flipping a coin,” says Levenson.

And if propaganda from either side rankles, mellow out. From a medical point of view, it probably doesn’t matter what you do.

Medical uses for foreskin

 Researchers are developing skin substitutes made from foreskins.

Working with Organogenesis Inc. in Canton, Dr. William H. Eaglstein, a dermatologist at the University of Miami School of Medicine in Florida, has studied a product called Apligraf made from cow collagen and foreskin cells. Because the cells proliferate in the lab, few are needed, he says.

In tests on 275 people with chronic leg ulcers, those who received the grafts healed faster than those who did not, he says.

Another foreskin product, Dermagraft, is designed for treating diabetic foot ulcers. Made by Advanced Tissue Sciences, Inc. in San Diego, Dermagraft, like Apligraf, it is scheduled for preliminary FDA review on Jan. 29. Last year, another form of Dermagraft, also made from foreskins, was approved by the FDA for treating burns.

To learn more

For more information on circumcision, send a self-addressed stamped envelope to:

• The American Academy of Pediatrics
  Dept. C-Circumcision
  PO Box 927
  Elk Grove Village, IL
  60009-0927

You can also call the Circumcision Resource Center, 617-523-0088.

 

Too much to do, too little time. Too many people to buy holiday gifts for, too little money. Too much food and alcohol, too little will power.

And sometimes most important, too little companionship for those who live alone or have lost loved ones, and too much for others suddenly plunged back into chaotic or abusive families.

If you are among the harried hordes this season, take heart. For one thing, it’ll soon be over. For another, there are ways — from the mundane to the meditative — to take care of yourself in the midst of the madness and get more joy out of the holidays.

Here’s a map through some of the minefields:

Expectations.

“The biggest source of stress is people’s expectations, including the expectation that from Thanksgiving to New Year’s Day you should be really happy and joyous and spiritual the whole time,” says psychologist Alice Domar, director of the Mind/Body Center for Women’s Health at Beth Israel Deaconess Medical Center.

“There is this notion that people should be having a good time. It invalidates one’s experience of sadness or loneliness or whatever it might be,” agrees Edmund Neuhaus, a psychologist at McLean Hospital in Belmont.

The solution, they say, is to recognize that you’re probably not going to give — or get — the perfect present, the holiday dinner may be over- or under-cooked, guests may be late.

Family dynamics.

One of the joys of the holiday season is getting together with friends and families. But that’s one of the biggest stresses as well. One key is to recognize that even if you’ve changed, there’s a good chance family dynamics haven’t.

“No matter how old you are, you are still someone’s son or daughter or someone’s mother or father,” says Neuhaus. “The youngest child in a big family may be 40 now but he’ll be treated like the baby he was at 5 or 10. . . That can create a lot of tension.”

The remedy is to anticipate this, tolerate it as best you can, and realize that at bottom the question many people are secretly asking of families at holiday time is: Are you ever going to acknowledge that I am worthwhile?

And if experience tells you that going home is always a disaster, there’s an important truth often overlooked at holiday time: You don’t actually have to go if you don’t want to, no matter what the pressure.

If you do choose to spend the holiday with family, you can control how much time you spend and what you do.

“Plan in advance what the program will be for the day, communicate that in advance, and structure the interaction so it will be minimally problematic,” suggests Dr. Andrew W. Brotman, chief of psychiatry at Beth Israel Deaconess. “It’s frequently easier to do visits for several hours rather than several days.”

You can show up for gift opening, say, then take a walk or a nap, and go back later. If you can afford it, consider staying in a hotel.

Really bad family dynamics.

The holidays are a “tremendous time of increased stress for women dealing with domestic violence because of cultural pressures to have the whole family together,” says Jane Oldfield, director of the violence intervention program at New England Medical Center. “They may have false hopes that things will get better or that they should get back together for the sake of the children for the holiday.”

That “could be dangerous,” adds Oldfield, who says hard data are sparse, but her experience suggests domestic violence goes up during holidays.

If you have been abused and feel sad or unsafe, call a domestic violence hotline, adds Georgianna Melendez-Brown, outreach coordinator for the Casa Myrna Vazquez.

Recognize that the abuser may try to manipulate you through the kids, who may feel sad if a father doesn’t show up. “The woman has to help the children cope with the reality, which is that their father isn’t able to be there for them in the way they deserve,” she says.

And be wary of the idea of getting back together with an abuser for the holidays, then planning to split up afterwards. It often doesn’t work.

Alcohol.

Like violence, alcoholism can pose a particular problem at the holidays, he adds. Social drinkers and alcoholics alike may feel more permission to overdo it and the anxiety of the season can push some people to use alcohol to “self-medicate.”

But there are support groups for alcoholics and for those whose lives have been affected by alcoholism, and many offer extra meetings around the holidays. Alcoholics Anonymous, for instance, has 24-hour “Alkathons,” from 6 p.m., on Christmas Eve to 6 p.m., Christmas Day, and a similar schedule at New Year’s.

Loved ones who aren’t there.

“One cannot help but think about those you have lost on the holidays — it’s not possible to dismiss that,” says Brotman. “The key is finding a way to cope.

Some people set an empty place at the table for a loved one who has died, or hang up an empty Christmas stocking. This may help some families, but can be too grim for others. In general, it’s best to acknowledge the loss, perhaps visit the cemetery, and reminisce with others who knew the person. And then move on.

Kids may need special help coping with a loss at holiday time, including gentle reminders that even Santa Claus can’t bring back a missing mother, father, or sibling.

Grieving can also be difficult for invisible losses, like the children you long for but haven’t had, the mate who hasn’t quite materialized. For infertile women, one source of comfort at holiday time may come from helping others, like by working in a soup kitchen.

Loneliness and depression.

Despite the lights and candles, the music and the merry-making, many people feel lonely during the holidays, whether they’re surrounded by other people or not.

“Everybody on the holiday is not filled with joy,” says psychiatrist Brotman. “It’s not abnormal to feel somewhat alienated, somewhat disappointed, to not have the joy and optimism for the new year that others have.”

The feeding frenzy.

The best way cope with the temptation to forget your healthful eating habits at parties is to start with a diet Coke or ginger ale, says Johanna Dwyer, director of the Frances Stern Nutrition Center at New England Medical Center.

That will not only slow down your alcohol consumption, but will fill you up a bit, too. You might also want to have a hard boiled egg before you go, on the same theory. Once at the festivities, try eating the crackers without the cheese or dip, or go for the veggies and fruits if your host offers them. Part of the holidays is enjoying special foods and a few indulgences probably won’t hurt, but moderation is the key.

If you have a serious eating disorder, go to extra support group meetings. When you’re at someone else’s house, tell your hostess about your vulnerabilities. Try not to have your eating — too much or too little — become the focus of the entire group.

Self-nurturing.

Don’t laugh. It is possible to take care of yourself while juggling the obligations to others, even at holiday time, says psychologist Domar.

“Spend half an hour a day on yourself,” she says. Take a hot bath, watch a movie, listen to a relaxation tape or, best of all, take a walk or do some other kind of exercise.

Exercise is the best “pill” for anxiety, depression and a host of other ills, she says. And it’s free.

SIDEBAR:

Where you can turn for help?

Some telephone numbers for help during the holidays:

• Family violence: Casa Myrna Vazquez, 1-800-992-2600. You can also call 911 for emergency help.
• Substance abuse: National Drug and Alcohol Treatment Referral Routing Service of the US Department of Health and Human Services Center for Substance Abuse Treatment, 1-800-662-4357.

You may also call 1-800-729-6686., the National Clearinghouse for Alcohol and Drug Information.

Alcoholics Anonymous can be reached at 617-426-9444. Al-Anon, for people affected by someone else’s drinking, can be reached at 781-843-5300.

• Depression. If you are seriously depressed, call the emergency room at your local hospital.

 

t was May 1996, somewhere over Nebraska.

The 38-year-old woman, six months pregnant, had begun her trip in Cairo, changed planes in New York and was on her way to Los Angeles. Suddenly, she began bleeding profusely and could no longer feel her baby moving.

A doctor who happened to be on board felt she was stable enough to make it to L.A., though she had lost a lot of blood.

But the worried flight crew called MedLink, a service that provides in-flight consultation with emergency room physicians at Good Samaritan Regional Medical Center in Phoenix.

The Arizona doctor, fearing for the woman’s life and believing the baby could be saved, urged the pilot – who had to make the ultimate decision – to divert the plane to Kansas City. Within an hour of landing there, the woman had a Caesarean section, and today both she and her infant son are fine.

Not to mention lucky.

Hurtling along in a big aluminum can six or seven miles above the Earth is not exactly the ideal place to go into labor, suffer a heart attack or have a life-threatening allergic reaction to peanuts.

But it happens – a lot – and when it does, you may be in for a nasty surprise.

“You’re on your own,” says John Fitch, flight coordinator for AeroMedical Group in Hayward, Calif., a service that, like MedLink and one run by the Mayo Clinic, helps airlines deal with the growing problem of inflight emergencies.

Here’s what you’re up against:

– Flight crews are not required to learn CPR, or cardiopulmonary resuscitation, the Federal Aviation Administration says, though some carriers do provide CPR and other limited medical training.

– All domestic flights must carry both a first aid kit and a medical kit. But the first aid kits haven’t changed much since the 1920’s and consist mostly of bandages and protective gloves. The medical kits are little better, and under airline rules may be opened only by a doctor or other health professional – if there’s one on board, as there often is. Faced with mounting concern about the inadequacy of the kits, the FAA and the Air Transport Association have set up panels to re-think them.

– Nobody knows the true frequency of inflight medical emergencies – or deaths – because airlines are not required to report them. Published news reports, however, suggest that as many as 350 people a year die from in-flight medical problems. If that’s true, it’s a lot more than the number of deaths from plane crashes, which range from a handful per year to more than 250, according to the National Transportation Safety Board.

– What’s not in doubt is that more people than ever are flying. In 1986, there were 419 million “enplaned passengers,” according to the Air Transport Association, an industry trade group. Last year, there were 581 million – and that’s just on domestic flights and those that leave or enter US airports.

– So-called “good Samaritan” laws, which give legal protection to health professionals who offer emergency assistance on the ground, do not apply in the air, a potential disincentive for going to the aid of a fellow passenger.

A decade ago, the FAA conducted a two-year study that suggested there were at least three medical emergencies a day on US flights, with about 9 percent resulting in a diversion, or emergency landing.

In February, the FAA released a study based on data from two airlines and two in-flight medical care delivery companies like MedLink suggesting there are 14,000 emergencies every year on major US carriers. That’s nearly four a day.

While that number may seem small compared to the number of people flying, it’s almost certainly an underestimate, say those who have studied the issue. And medical emergencies aloft are rising not just because people are flying more, but because they’re flying older and sicker, says Joan Sullivan Garrett, a critical care flight nurse who in 1985 founded MedAire, the company that operates MedLink. She testified on in-flight emergencies last spring before a congressional subcommittee.

They are also flying with more disabilities, thanks in part to the Americans with Disabilities Act of 1990, which forbade discrimination against those with disabilities, including those medically at risk.

While many fliers have the same heart attacks, strokes or other emergencies that they might have on the ground, there is also an increased risk in flight because the reduced air pressure in the cabin – often equivalent to being at about 8,000 feet altitude – means less oxygen gets into the bloodstream than at sea level. This poses a particular problem for anyone with anemia, or cardiac and respiratory problems.

Although the government has only partial data on the growth of in-flight medical emergencies, some of those trying to bridge the gap between airborne patients and doctors on the ground have been keeping track of the surge in business.

Between 1987 and 1996, for instance, MedAire handled 2,500 in-flight emergencies, patching radio calls from flight crews through to doctors in Phoenix. This year alone, the firm, which serves 10 carriers, has handled 1,500 calls, says Garrett, the company’s head.

About one quarter involved heart problems, she adds, another quarter, fainting (which may also be triggered by cardiac troubles) and a fifth, neurological problems like seizures and strokes. These figures correlate roughly with FAA estimates.

In-flight emergencies also keep doctors busy at the Mayo Clinic, which handles inflight consultations for Northwest Airlines. In fact, the clinic averages one medical emergency a day, says Dr. Robert Orford, who handles the consultations.

Mindful of both passengers’ health and the fact that an emergency landing can cost hundreds of thousands of dollars if the plane must dump fuel to avoid landing with full tanks or has to put delayed passengers up in hotels, airlines are beginning to look for more ways to deal with in-air medical problems.

In July, American Airlines equipped its overseas fleet with automatic external defibrillators to monitor people with heart attack symptoms and deliver an electric shock when necesssary to restore normal cardiac rhythm. So far, the machines have been used 28 times, mostly as monitoring devices.

The airline also employs seven doctors, available 24 hours a day, says Dr. David McKenas, corporate medical director. And because “the FAA medical kit has very little in it,” American is adding equipment for “advanced airway management” for patients who have trouble breathing, a wider variety of medications, and other features that will “permit a physician to handle the first hour of virtually every emergency,” he says.

New technology may soon make in-flight medical consultations even better. One system, called LifeLink, was developed by a Michigan physician and Kevin Montgomery, a California software engineer.

Working in his garage when he wasn’t at his job at the NASA Ames Research Center, Montgomery hooked up a machine that monitors vital signs to a laptop computer. He then figured out a way to compress the information and transmit it over the telephones on airplane seat backs via the Internet to doctors on the ground. The system is not yet on the market.

Another remote diagnostic system called VitalLink, made by Telemedic Systems, Inc. of Redmond, Wash., will use satellite hookups to link flight crews with medical experts. That system should be on the market next year, says Ralph Schneideman, a Telemedic vice president.

But there’s a lot more that could be done to deal with emergencies aloft in an era when flight attendents are no longer required to be nurses, as they were 50 years ago.

Congress, for instance, is considering legislation to set up government standards for tracking and handling in-flight medical emergencies, extend good Samaritan laws to the air and beef up medical kits, including requiring defibrillators.

The Air Transport Association is embarking on a program to standardize reporting of medical problems by airlines, says ATA spokesman David Fuscus. And flight attendants are pushing hard for more training in handling emergencies.

“We would like much-improved training,” says Mary Kay Hanke, international vice president of the Association of Flight Attendants, which represents 42,000 members.

Still, the bottom line up there in the potentially unfriendly skies is that medical care on board is hard to come by. That means, says Marty Salfen, senior vice president of the International Airline Passengers Association, that “if you have any type of medical condition, see a doctor prior to getting on the plane.”

And if you feel sick once you’re on board, “contact the flight attendant. Don’t wait until it’s virtually too late.”

 

Some tips for the flyer

Health and aviation specialists offer the following tips that may help protect against in-flight medical emergencies:

• If you have a serious medical condition, ask your doctor whether it’s safe to fly and what precautions to take if you do.
• If you get short of breath on the ground – from emphysema, anemia, cancer or other condition – recognize that this may get worse when you fly. On many flights, the cabin air pressure is equal to that at the top of an 8,000-foot mountain. This means your lungs must work harder to extract the available oxygen.
• If you will need oxygen on board, tell the airline at least 48 hours before your flight. You may have to pay $ 50 to $ 75 per tank or trip. (You can’t take your own because the tanks made for home use are not certified for use in aircraft. If improperly sealed or bumped, the oxygen, under high pressure, could leak and turn the tank into a missile.)
• Pack medications, including nitroglycerin for heart problems, inhalers for asthma, and epinephrine for allergies, in your carry-on, not in your checked luggage.
• If you have serious allergies or other life-threatening conditions, wear a medical alert bracelet.
• If you are seriously ill, travel with a companion who knows your medical history, including the drugs you are taking.
• Drink plenty of fluids – a glass of water per hour – to minimize dehydration. Don’t drink alcohol or caffeinated beverages, which are dehydrating.
• Move around as much as possible and do gentle stretches in your seat to minimize the possibility of a blood clot forming.
• Try not to fly if you have a cold. If you must, take whatever antihistamine or decongestant your doctor recommends to reduce sinus swelling. And be considerate of fellow passengers and flight attendants – cover your mouth when you cough, dispose of tissues in a bag, and wash your hands often.
• Recognize that flying is stressful, both emotionally and physically, so allow enough time to park and catch your flight.