LLUAHSC SCOPE Summer 2001 - Specialty team centers

Specialty team centers benefit from eighth annual LLUCH Foundation gala

[SCOPE, Summer 2001]

Proceeds from the eighth annual Loma Linda University Children's Hospital Foundation gala will enable the specialty team centers to continue to provide comprehensive, quality care to compromised children. There are 12 teams providing this specialized, multi-disciplinary care to area children. They are:

Bronchopulmonarydysplasia (BPD) team

Children who come to this center are generally born prematurely and have BPD, a chronic lung disease that develops in premature infants after a period of intensive respiratory therapy.

There is a high risk for developing respiratory viral infections among these children.

One of the most common and potentially serious of the viruses is respiratory syncytial virus (RSV), which usually causes cold-like symptoms in older children and adults, but causes infants born prematurely and those with BPD to be very sick.

Craniofacial team

Most of this center's patients have a history of cleft lip or cleft palate, and sometimes both. Cleft lip and palate occur during the first two months of gestation. A cleft lip does not completely fuse together, creating an opening or gap.

The most common cleft lip is of the upper lip, between the nose and mouth. Cleft palate occurs when there is an opening in the roof of the mouth. Either of these problems can make it quite difficult for the child to drink when bottle-fed and parents often have to be taught how to feed their child.

The team also sees many children with abnormal ear shapes, or children whose outer ears are not completely formed.

In addition, they see a large population of babies born with abnormally shaped heads. Most babies' heads aren't quite the right shape at birth, but correct themselves as the babies grow. In some babies, the sutures in their skulls close too early, which restricts the growth of the head.

Cystic fibrosis team

This genetic disorder involves the exocrine glands and can cause chronic obstructive pulmonary disease, pancreatic exocrine deficiency, urogenital dysfunction, and abnormally high electrolyte concentration in the sweat.

Children with cystic fibrosis often have to go through extensive therapy to keep their lungs clear of mucous. They also have to take enzymes before a meal so that their bodies can digest the food. These children are admitted into the Children's Hospital two to four times each year for what clinicians call a "tune-up."

Diabetes team

It can take four to six hours or more to educate one patient and family about how he or she should eat when diagnosed with diabetes. To control blood sugars and prevent long-term complications such as blindness, kidney failure, amputation, and coronary artery disease, one in every 300 children who have this condition must perform many painful rituals each day--lancing a finger four to six times every day for blood glucose readings, taking insulin by injection three or more times a day, and taking urine tests.

The diabetes team works hard to change the diagnosis of diabetes into a manageable health challenge.

Gastroenterology/total parenteral nutrition (GI/TPN) team

Children who attend this clinic have to be fed through an IV tube inserted directly into the stomach through the abdominal wall. Painful infections often develop around these tubes.

The GI/TPN team is designed around the needs of these patients with disease and abnormalities which affect the ability of the gastrointestinal tract to digest and absorb needed nutrition through the normal process of eating and drinking.

The care of these children involves a range of services as they transition back and forth from gastrointestinal health to illness. The center's goal is to provide necessary nutritional support, optimize normal growth, and encourage and allow these children to be raised at home in a normal family setting.

Home mechanical ventilator (HMV) team

This program is designed for the child who requires ventilator support on a part-time or full-time basis for several months or years.

Most children require ventilation because of neuromuscular disease, spinal cord injuries, chronic lung diseases, and brain disorders. Home mechanical ventilation is only for the child and family who are committed to the responsibilities of providing safe and effective care.

The immediate goals of this HMV program involves keeping the children safe and functioning in society.

Infectious disease (ID) team

The ID team combines excellence in medicine with social, dietary, community, and case management services to provide specialized, quality care to children exposed to or infected with HIV.

This clinic is the only one of its kind to serve the children of San Bernardino and Riverside counties. The challenges faced daily by children living with HIV sometimes seem insurmountable.

The goal of the ID team center is to provide the medical care, support, and services necessary to allow these children not only to cope with their disease, but also to realize their dreams and achieve their potential.

The team strives to form solid relationships based on mutual trust and respect with each of the children and their families.

Metabolic team

Members of the metabolic team work to ensure that patients who have trouble digesting their food receive the proper nutrition that will enable them to grow and thrive.

Neonatal intensive care unit (NICU) developmental team

This developmental team focuses on the current and future developmental needs of high-risk infants in the outpatient setting. Neonates with birth weights below 1,500 grams or born at 33 weeks of gestation or earlier are eligible for this team. Infants with birth asphyxia or severe metabolic neurologic problems are also eligible.

A high-risk infant is one at risk for possible neurological damage. This damage can be caused from being born prematurely, resulting in bleeding in the brain and seizures.

At 4 and 9 months of age, these babies receive a thorough neurologic exam and a movement assessment of infants test. At 18 and 30 months they have another neurologic exam, a Bayley developmental test, and language evaluation. At 4 and 6 years, children are assessed with a neurologic exam, a Wechsler test, formal language testing, and attention deficit disorder evaluation.

Children who do not have this developmental follow-up are at a greater risk for both mental and physical delays.

The neonatal intensive care unit developmental team's goal is to assist these children in reaching their optimal development, and to help the family cope with the stress and demands of having a neonate baby at home.

Neurology team

Children may acquire neurological problems at any time--before birth due to infections, malformation, or prematurity; during birth due to pressure on the brain that causes bleeding; or after birth because of accidents, behavioral problems, or headaches.

It is not uncommon for patients to have multiple problems. For example, a newborn who has congenital hydrocephalus (water on the brain) and failure to thrive, or a toddler who has cerebral palsy and a seizure disorder. Autism and developmental delay can also be challenges for this group of children.

This is one of the smallest teams in terms of staff members, but they see the highest volume of patients. Physicians order tests such as EEGs, MRIs, and blood tests to assess and maintain a treatment plan.

Many of these children are on multiple medications in order to sustain and improve quality of life. Visits to the center allow clinicians to watch the children's health closely. As they grow and their medical needs change, team members will make adjustments--for example, getting them wheelchairs, braces for their legs, or helmets to protect the head during seizures.

Rheumatology team

Little is known about juvenile arthritis, and there are only 20 physicians board certified in pediatric rheumatology nationwide. But the field is growing and, with it, knowledge to help these children who live such painful and crippling lives.

The rheumatology team is designed to meet the needs of children with these diseases. The team provides comprehensive care, including consultation, diagnostic evaluations, treatment, follow-up care, and the coordination of services for the patient and family.

Spina bifida team

Sometimes babies are born with a portion of their spinal cord exposed outside their bodies. There is no bone or skin to cover the exposed spinal cord. For these children, surgery is a way of life if they are to survive. Spina bifida is the second most common birth defect after Down syndrome, and probably the least-known.

However, only two percent of these children are mentally retarded. Some of these children have been in the hospital for surgery so many times that they develop latex allergies from overexposure to latex gloves. They can have kidney problems and orthopaedic deficits that require solutions from mild bracing to being wheelchair-bound for life. "In some cases the specialty team areas provide miracles for these kids," says Catherine Ingles, director of the specialty team areas.

"Where we cannot provide miracles, we give all the medical knowledge we can, intertwined with all the love we have, to help make their lives more livable."

[SCOPE, Summer 2001]