(Parenting) -- Meg Falciani has nothing but respect for the community hospital near her tiny town of Malaga, New Jersey.
After all, her husband's grandfather was one of the founders, and she's gotten great treatment there. But when her 4-year-old daughter, Celia, gashed her chin open, Falciani drove right past her ER, which is only minutes away, and traveled nearly an hour to reach Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware.
"Our local hospital is great for adults," says Falciani. "It's just that they have no pediatricians on staff, they don't have a lot of pediatric-size equipment, and they don't admit children. If you have a seriously ill or significantly injured child, they'll stabilize her and transport her to another hospital."
Falciani had already gone through that when her oldest son, Luke, now 10, was a toddler. She took him to the local ER after he developed a high fever and became dehydrated. He needed intravenous fluids, but the hospital didn't have a small enough catheter to easily insert the IV line.
When they finally managed to get in a larger one, the staff had to tape tongue depressors together to form a child-size stabilizer to prevent him from pulling it out. After that, an ambulance took him to duPont for further treatment.
In the years since then, the mom of four says she hasn't seen much movement toward a more kid-friendly approach.
"It's not a very confidence-inducing thing," she says.
And given that Celia has chronic health problems, Falciani has decided that, in many cases, the local hospital won't work for her daughter.
Falciani's situation may seem more the exception than the rule -- after all, she lives in a rural area and her daughter has special medical needs. But the truth is, her family's experience is far more common than anyone might think.
Although children make nearly a third of all ER visits, a mere 6% of hospitals have all the pediatric supplies they need, according to a report from the Institute of Medicine, an independent research organization that advises the government.
What's more, only a quarter of hospitals have access to doctors board-certified in pediatric emergency medicine, and more than a third have no pediatric specialists on call at all. Without their specialized knowledge, kids' care can be seriously affected.
Take the results of this Johns Hopkins and Duke-sponsored mock drill, which tested 35 North Carolina emergency departments, including five trauma centers: Nearly all failed to stabilize injured children properly, to correctly treat kids with a life-threatening drop in blood sugar, or to order proper IV fluids.
The report, which was published in Pediatrics, was so troubling that Parenting reached out to doctors and moms nationwide to learn about their experiences, and their stories offered only more of the same.
The lack of expertise is not a North Carolina problem (or a New Jersey one); it's nationwide in scope.
Special care required
Of course, pediatricians aren't the only doctors qualified to care for children in an emergency -- all types of ER docs save kids' lives every day. But problems can arise when someone isn't used to seeing kids and has an adult patient as his or her point of reference, says Laura Fitzmaurice, M.D., a pediatric emergency physician at Children's Mercy Hospitals and Clinics in Kansas City, Missouri.
"He could miss the red flag that tells him 'I need to do more.' Or he could miss things that are more common in children."
That's because kids aren't just miniature adults -- research shows they react differently to illness, injury, and treatment, says Steven Krug, M.D., head of emergency medicine at Children's Memorial Hospital in Chicago.
Their body temperatures can rise more quickly, and their fevers are more difficult to bring down. Illnesses, including infections like meningitis, tend to come on more suddenly and progress more rapidly than in adults. This means extremely ill kids can look and act as if they are not that sick, but then deteriorate quickly.
And because children are also more vulnerable to toxins and have smaller blood volumes, even small amounts of blood loss can lead rapidly to shock or even death, say Dr. Krug.
Add the fact that many are too young to explain exactly what hurts or how they feel, and it's easy to see how mistakes can be made and symptoms missed.
Case in point: When researchers at Iowa Methodist Medical Center evaluated patient care at a community hospital for six months, they found that the staff overlooked 18% of pediatric trauma injuries.
Mariah Spry, a mom from Dayton, Nevada, experienced her own near miss. Her daughter Avery has a gastrointestinal disorder, so when the then 2-year-old threw up repeatedly and became lethargic, Spry was alarmed. On the advice of her doctor, Spry drove her to the closest local ER, half an hour away.
Avery seemed a little drowsy, but the nurse who saw her didn't think any immediate tests were necessary. Although Spry explained that Avery had a history of hypoglycemia, a condition in which blood sugar can drop dangerously, she still had to insist on the blood screen before it was ordered. The test showed Avery was on the brink of a hypoglycemic coma.
Even when the staff took action, things didn't go well. It took another ER nurse two hours and 15 tries to insert an IV in the dehydrated child, despite Spry's pleas to the staff to call a pediatrician and get special equipment from the hospital's pediatric floor.
Although inserting an IV line is a basic and often essential emergency procedure, it can be especially difficult in children, who not only have small veins (quickly made smaller when they're dehydrated), but who also are usually wriggling and crying.
"I think it's one of the most difficult jobs," says Corey McLeod, M.D., an ER doc at the Mad River Community Hospital in Arcata, California.
And it's only made harder when the staff hasn't had enough opportunity to practice.
Of the nation's more than 5,700 hospitals, only about 250 are children's hospitals, and these tend to be clustered in major cities or towns with large universities. Translation? Just 7% of ER visits by children are to these specialized medical centers.
A big reason: In most states, one quarter to one third of the population lives in rural areas. And unlike city kids, who often have easy access to multiple hospitals, children in the countryside face longer trips to get help, and once there, they're less likely to be treated by a pediatric specialist.
Ted Humphry, M.D., has been a pediatrician in rural Humboldt County, California, for more than 30 years, and knows the challenges all too well.
"We have three hospitals in the county, and none has a pediatric trauma center. But we do pediatric trauma because we have to," says Dr. Humphry. "We just have the bare essentials for stabilizing and arranging for transport."
It's often a minimum delay of five or six hours before a child gets to one of the bigger hospitals, he says. Urban hospitals have their own set of unique challenges when it comes to caring for their youngest (and actually, all) patients. A full two thirds of urban ERs operate over capacity, according to the American Hospital Association, and more than half of those practice "diversion," where they close their ERs to ambulances for periods of time.
"ERs are hopelessly overcrowded, and the world's best triage nurse isn't going to be doing his job as well as he can if there are fifty people waiting," says Dr. Krug.
Brandy Nannini, who lives just outside Washington, DC, experienced the harrowing fear of diversion last year when her then 1-year-old daughter, who has a chromosomal disorder, had a seizure. She requested to go to the city hospital where her daughter's doctor was based but discovered its ER was closed.
"My daughter was blue and looked like she was dying," she says. "We ultimately had to go to the little community hospital down the street. The doctors were able to stabilize her, but it was obvious we made them nervous. Besides her being so young, she's got a complicated medical condition, and you could tell she wasn't the type of patient they see every day," she says.
Still, Nannini is grateful they were able to get in when they did -- half an hour after they arrived, that emergency room closed down as well.
"I wasn't able to stop being upset about the diversion until hours later, when Isabella was finally transferred to the medical center. I'd never seen anything like it: There were gurneys everywhere, people with major trauma, horrible flu. They really didn't have any room for us earlier."
Playing any kind of ER roulette -- whether it's because the closest one is closed or you're worried about the quality of care -- makes many doctors squirm. In Spry's case, her doctor now advises her to skip her local hospital and drive another 15 or 20 minutes to another that seems more prepared to treat kids.
"It's a tough situation to advise people to bypass the nearest medical center because the vast majority of real emergencies involve breathing problems," says Joan Naidorf, D.O., an ER physician at Inova Alexandria Hospital in Alexandria, Virginia.
Take choking, for example. Many parents are tempted to jump in the car and race to the hospital, says Dr. Fitzmaurice.
"But if you get halfway to the ER and he stops breathing, you're behind the eight ball. You're on a highway trying to call 911 from a cell phone."
And if you'd decided to shoot for the bigger -- but farther away -- medical center, the stakes could be even higher. Because of that, Dr. Naidorf believes the need for immediate treatment should trump fears that some staff may be less experienced in dealing with children.
Dr. Fitzmaurice completely agrees -- in a critical situation, call 911 or head to the nearest hospital (see page 88 to learn how to make the safest decision). That said, she also sees nothing wrong with taking more time to get to a hospital that specializes in pediatrics in less urgent situations.
If your child has hit his head and you suspect a concussion, any ER doc can diagnose it, but doctors at a children's hospital will be more able to give you advice on after- effects and continuing care specific to children and adolescents.
Meg Falciani performs just this kind of triage when any of her four children is ill or injured.
"If it's life-or-death, it's the closest place," says Falciani. "The problem is that whole very gray area in the middle that children love to be in."
And like Falciani, most parents will at some point be forced to navigate that gray area and make a scary call. But no parent should have to worry that the hospital she takes her child to may not be adequately equipped, prepared, or fully trained to care for him. Yet millions face that reality every day.
In fact, when the American College of Emergency Physicians issued its latest report card in December on the state of emergency care in the U.S., it gave the country a D- on access to care and only a C+ for quality and patient safety environment.
The work to be done is staggering, but there are some glimmers of hope. The Wakefield Act, which is expected to be reintroduced in Congress this spring, is one of them. Its goal is to provide the necessary funds to ensure kids get the help they deserve at every hospital ER (see "Hey, Congress!" below, for more details).
You are another. When moms speak out, people in power tend to listen. It's up to us to demand that the hospitals in our hometowns have the support, training, and resources they need to safely care for kids. Until we make our voices heard, we have no choice but to hope that the near misses don't get any closer.
What to do before disaster strikes
1. Know where you'll go and the best way to get there. If you're lucky enough to have a choice of local ERs, ask your doctor which one is best prepared to treat children, says Jerrold Eichner, M.D., chairman of the AAP committee on hospital care.
If your child has a chronic condition or special needs, it also can't hurt to call the ER director, says Joan Naidorf, D.O., an emergency physician in Alexandria, Virginia.
"You can say, 'My child has X problem. Do you have all the equipment you need to treat him?'" They'll be honest about whether their hospital is the best place for your child -- no one wants to lure a case they can't take care of. You can also check hospital ratings and complaints at JointCommission.org.
2. Make a mini-medical file. Any parent can blank on her child's health history at 4 a.m. (and other caregivers simply may not know all the details).
Download the forms at MyPHR.com to record your child's current height, weight, medications, health conditions, previous injuries or illnesses, and allergies, and the ER staff will have the basics ready to go. Make copies to keep in the car, your purse, and, if your child is young, the diaper bag. It's a good idea to attach your child's vaccination record as well (ask your doctor for a copy).
3. Give consent. Caregivers need a consent form from you to authorize medical treatment for your child. You can find ones to download at Lawdepot.com.
4. Take a CPR class. Lots of new parents take them before giving birth, but you can keep your skills sharp with a refresher course. Find one near you at Redcross.org. When to go to the ER -- and when to call the doc
Call 911 if your child:
• Has difficulty breathing or is choking
• Has any bleeding that doesn't stop after applying pressure for a few minutes
• Has a large or deep cut, or one that affects the head, chest, or abdomen
• Has a large burn, especially one that involves the hands, feet, groin, chest, or face
• Has severe pain that is persistent or worsening
• Has a seizure (place your child on the floor, on his side; do not put anything in his mouth)
• Becomes unconscious, or fails to respond
• Has skin or lips that look blue, purple, or gray
• Develops sudden neck stiffness along with a rash and a fever
• Has any loss of consciousness, confusion, headache, or vomiting after a head injury
Reminder: Do not move a seriously injured child unless he's in immediate danger from something else.
Call your doctor first if your child:
• Has vomiting or diarrhea that lasts for more than a few hours
• Has a rash, especially with fever
• Has a cough or cold that does not improve after several days or gets worse
• Has a cut you think may require stitches
• Limps or is unable to move an arm or leg
• Has problems swallowing
• Has sharp or persistent abdominal pain
• Has a rectal temperature of 100.4°F or higher (in a baby under 2 months with no other symptoms)
• Experiences any of the following, even if he has no obvious symptoms: bicycle or car crash, a fall, sports injury, burn or smoke inhalation, electric shock, near drowning or choking
Reminder: For poisoning, call Poison Control (800-222-1222), then your pediatrician.
You're there: what to expect
You've made it to the ER -- now what? Ellen Hollon, a spokesperson for the Child Life Council, offers advice on how to navigate like a pro.
Try to stay calm. Yes, that's a tall order in this situation, but if you're able to keep a cool head, your child will be less anxious. She gets the message that if Mom can deal with this, then she can, too.
Advocate, advocate, advocate. It's easy to be intimidated by doctors, especially when you're already stressed. But try to leave those fears at the door.
Ask questions and take notes. It's a doctor's job to address all of your concerns. Same goes for when you check in: Make sure the staff understands why you consider this an emergency. If a receptionist tells you to wait and you feel you need to be seen immediately, ask for the triage nurse. And when it's time to go, make sure you've been given clear instructions.
Ask for pain management up front. IVs or blood draws can be frightening, and they're not pleasant. Most hospitals have numbing creams available but may not use them unless requested.
Request a child life specialist. Many hospitals have trained professionals on staff who help kids (and their parents) deal with stressful hospital experiences. For more info, go to Childlife.org.
Be honest -- sort of. If your child asks if a shot will hurt, admit that some people do find it uncomfortable, but then ask, "I wonder how it will feel for you?" allowing your child a range of responses.
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