“On a child like this [who] has a heart surgery, heart defect, history of fluid on the lungs and is having difficulty breathing and needs oxygen … we’re going to do the whole work-up.”

– Dr. David Goo, emergency room pediatrician at Children’s Healthcare of Atlanta

It’s tough enough for otherwise healthy babies to fight off illnesses, but for babies who are labeled “medically fragile,” even a simple cold virus can be potentially devastating.

“Okay, and the reason you came in today is because he’s having difficulty breathing and because of his fever?” Dr. David Goo, a pediatrician at Children’s Healthcare of Atlanta, asks the mother of 4-month-old Ethan. Ethan’s mom says yes.

Fever, coughing and wheezing always are worrisome symptoms, but even more so for Ethan. He had heart surgery right after he was born, and because of the condition of his heart and a variety of other problems, doctors place him in the category of a “medically fragile child.”

Dr. Goo explains how he’ll have to handle Ethan’s medical problems. “On a child like this [who] has a heart surgery, heart defect, history of fluid on the lungs, has immuno-compromised state, and is having difficulty breathing and needs oxygen, we’re going to do the whole work up,” he says.

They do blood work, take x-rays and check Ethan for a common virus called RSV. All the tests come back negative.

“But we think he probably just had a bad cold with a high fever,” says Dr. Goo. “But because he’s medically fragile, we went ahead and admitted him to the hospital so that we could observe him carefully over the next 24 to 48 hours to make sure he doesn’t get worse.”

Because he is too weak to eat on his own, Ethan has been on a feeding tube for several weeks.

“And a gastrostemy tube allows us to give nutrition, to either supplement what’s taken orally or to allow us to feed until the child is old enough to eat by themselves or learn how to eat by themselves,” says Dr. Goo.

After he gets over the cold, Doctor Goo says there’s a good chance Ethan will get strong enough to eat on his own … and, in time, become a strong and healthy boy.

“If Ethan gets enough nutrition that he gets bigger and he’s able to take enough calories on his own through his mouth, and he has decreased work of breathing because he’s having to have extra oxygen,” Dr. Goo adds, “then yes, eventually he’ll grow out of that, they’ll take out [the feeding tube], the hole will heal up, he’ll have a little tiny scar and he’ll be good to go.”

Children’s Healthcare of Atlanta
Children’s Healthcare of Atlanta Emergency Services
North Carolina Public Health
ARCH National Resource Center for Respite and Crisis Care Services
U.S. Department of Health and Human Services: Administration for Children and Families
National Children’s Bureau

“Demetrius
is here today because he’s got leg swelling?” ask Dr.
Goo, “Yes,” says 5-year-old Demetrius’ Mother,
Shantricia Anderson.

Not only that, “And he’s also had a fever today,
right?” ask Dr. Goo, “Yes,” replies Mrs. Anderson.

To make matters worse, Demetrius is having trouble breathing.

Doctors are worried it’s a replay of what happened two
months ago…

“This is the same leg that he had a history of a blood
clot previously on,” says Dr. Goo, “And my concern
immediately again was that he had another clot in his leg, and
maybe the blood clot had traveled from his leg into his lungs.”

Demetrius has a condition called brittle bone disease… so
another possibility is that his leg is fractured.

“When you have brittle bones, you can have a broken bone
or fracture from very minor trauma,” says Dr. Goo.

And, to add to the mystery, his breathing problem could be
his asthma….

“So he was very interesting in that he is a medically fragile
child and he has many possibilities for him to have a swollen leg
and difficulty breathing,” says Dr. Goo.

But… after an x-ray… a sonogram, and a c-t scan… doctors
find no evidence of a broken bone, or a blood clot.

“But they did see some areas that were consistent with
infection of the lung,” says Dr. Goo.

It turns out… Demetrius has pneumonia.

The leg swelling is a harmless side effect of his previous blood
clot.

So it turns out… all Demetrius needs is an antibiotic,
and doctors will send him home.

“I think Demetrius is going to do very well in this particular
illness,” says Dr. Goo, “I think he’s going to
resolve his pneumonia. He’s going to get treatments for his
asthma and feel better and probably resolve this 100-percent.”

The number of medically fragile children is growing, and proper assessment
and treatment is becoming more necessary. According to a study preformed by
North Carolina Public Health, the top 10 procedures used to identify medically
fragile children in North Carolina recently included:

• Continuous mechanical ventilation for 96 consecutive hours or
  more
• Enteral infusion of concentrated nutritional substances
• Replacement of ventricular shunt
• Other procedures for esophagogastric sphincteric competence
• Parenteral infusion of concentrated nutritional substances
• Ventricular shunt to abdominal cavity and organs
• Ureteroneocystostomy
• Temporary tracheostomy
• Closed [endoscopic] biopsy of bronchus
• Other partial resection
  of small intestine

Because of the recent rise in the number of medically
fragile children, there has been a growing need in recent years for crisis
nurseries geared toward providing medically supervised care for medically
fragile children. According to experts at the ARCH National Resource Center
for Respite and Crisis Care Services, children who meet the criteria identifying
medically fragile children include :

• Infants on an apnea monitor
• Infants born prenatally exposed to alcohol or drugs (e.g., infants
  with Fetal Alcohol Syndrome or Crack/Cocaine exposure)
• Children who are admitted directly from a hospital where they
  have received care for a significant injury or illness
• Children with special breathing problems requiring significant
  care or ongoing alteration in the daily routine due to the medical
  condition
• Children in Spica Casts (body casts from waist to feet)
• Children with specialized feeding problems (e.g., feeding tubes,
  cleft lip and palate)
• Children with infectious or contagious diseases (e.g., hepatitis,
  sexually transmitted diseases, HIV–related conditions)
• Children with chronic health problems such as diabetes, asthma
  or seizure disorders

In order for a child to receive crisis nursery care, a medical program
which includes the following elements must be developed by medical
professionals:

• Initial medical exam and assessment
• Medical history and prescribed treatment from referring entity
  (infants referred from hospitals are more likely to have this information
  available)
• A weekly clinic where children who are medically fragile may
  be examined by a physician, treatment can be revised, and any staff
  concerns addressed
• The availability of emergency consultation with a physician during
  evening and weekend hours
• Separate medical exam room where children may be seen by the
  nurse or physician, sick children may be monitored, medications
  stored in locked cabinets or a locked refrigerator, and medical
  supplies and equipment stored (this room may also store special
  foods or formulas required by children)
• Procedures for when, how and where to refer children requiring
  urgent medical treatment
• Medical staff capability to teach older
  children aged six to eleven how to care for their own medical
  conditions