Complex Care Program

Why Choose TGH for Complex Pediatric Care

The Muma Children’s Hospital Complex Care Program offers comprehensive primary and specialty care tailored to the unique needs of each patient. Unlike many pediatric programs that provide only limited consultative services, such as NICU follow-ups with recommendations sent to the child’s primary pediatrician, we take a hands-on approach by serving as the child’s pediatrician and provide a medica home for the patient. To further simplify the complex care process for our patients and their families, we can coordinate same-day appointments with subspecialists within our clinic, ensuring streamlined, integrated and convenient health care.

Another key factor that distinguishes our pediatric Complex Care Program is our emphasis on a high-touch healthcare experience. Serving as a liaison among our patients, clinic and hospital, our experienced inpatient navigators and outpatient coordinators are always available to assist with appointment scheduling, follow-up care, rehabilitation, medical equipment and other subspecialty needs.

Care Coordination

At the Muma Children's Hospital at TGH, we take pride in providing an exceptional level of care and attention to every patient, and our dedication extends to each program we offer. Within each program, we have a team of experienced and dedicated outpatient and inpatient Program Navigators who are committed to ensuring a seamless and personalized experience throughout the entire journey of care. Think of them as your personal concierge, always ready to communicate and assist at every phase. These Program Navigators play a crucial role in coordinating care across all necessary medical specialties, ensuring that each patient receives a tailored treatment plan that caters to their individual needs. From the beginning of your journey to the very end, your Program Navigator will be there, offering frequent communication, scheduling appointments, assisting with transition of care to the home, offering bedside education and acting as a liaison between your outpatient and inpatient teams. 

At the Muma Children's Hospital at TGH, we believe in the power of a strong support system. Your Navigator will be your constant companion, guiding you through each step of your journey with care and compassion. With us, you can rest assured that you and your child will receive the utmost attention and expertise to make the path to healing as smooth as possible.

The Muma Children’s Hospital Complex Care Program provides multidisciplinary care for pre-term infants born before 32 weeks of gestation as well as babies and children who have:

• Neurological issues – Significant seizures, hypoxic-ischemic encephalopathy (HIE), traumatic brain injuries (TBI) or developmental delays
• Respiratory issues – Oxygen dependence or chronic lung disease
• Cardiac issues – Congenital heart disease or cardiac medication dependence
• Gastrointestinal issues – Short bowel syndrome, significant dysphagia or failure to thrive
• Genetic or metabolic syndromes – Down syndrome, cystic fibrosis, inborn errors of metabolism (such as phenylketonuria, or PKU), congenital adrenal hyperplasia (CAH), spinal muscular atrophy (SMA) or fragile X syndrome
• Conditions that cause growth or feeding difficulties – Celiac disease, cerebral palsy, gastrointestinal reflux disease (GERD), eosinophilic esophagitis (EoE) or hypothyroidism
• Adaptive technology – Brain shunt, feeding tube, tracheostomy, ventilator or wheelchair

Testing and Diagnostics for Complex Pediatric Conditions

Through TGH, our patients can benefit from the latest advances in diagnostic testing, including:

• X-rays – A quick, noninvasive technique that uses a low dose of radiation to create black-and-white images of bones and other tissues, X-rays can be used to identify fractures, infections and certain lung conditions, such as pneumonia.
• Computed tomography (CT) – This advanced imaging technique combines X-ray technology and computer processing to create detailed cross-sectional images of organs, blood vessels and other soft tissues. CT scans can be used to help diagnose a wide range of conditions, including infections, injuries and cancer.
• Magnetic resonance imaging (MRI) – MRI uses a strong magnetic field and radio waves to generate high-resolution images of internal bodily structures, such as the brain, spinal cord, muscles and joints. It can be particularly useful for soft tissue imaging and detecting conditions such as brain tumors, spinal injuries and joint disorders.
• Ultrasound – This noninvasive imaging technique uses high-frequency sound waves to create detailed images of organs and other bodily structures. It is often used to assess organs such as the liver and kidneys, monitor pregnancy and guide procedures such as biopsies and drainage.
• Echocardiogram  – An ultrasound of the heart, echocardiography can help a physician evaluate the heart’s function, structure and blood flow. It is often used to diagnose cardiovascular conditions, such as valve disease, heart failure and congenital heart defects.
• Electrocardiogram (ECG / EKG)  – An ECG records the electrical activity of the heart over time. By detecting irregular heart rhythms, this test can help a physician diagnose cardiovascular issues, such as arrhythmia and heart attack.
• Blood work – Laboratory tests on blood samples can detect a variety of health issues, including infections, anemia, diabetes, liver and kidney diseases and markers of heart disease or cancer. It can provide important clues about a patient’s overall health and organ function.
• Endoscopy – This minimally invasive procedure uses a flexible tube with a miniature camera attached (endoscope), allowing a physician to view internal organs and examine the gastrointestinal tract, respiratory system or urinary system. Endoscopy can help the physician diagnose ulcers, tumors or inflammation.
• Bronchoscopy – This specialized endoscopic procedure that allows a physician to examine the airways and lungs. It can be used to help diagnose respiratory issues, such as infections, tumors and chronic conditions like asthma and chronic obstructive pulmonary disorder (COPD). It may also be used to obtain tissue samples for biopsy.
• Biopsy – Essential for conclusively diagnosing many conditions, including cancer, infections and inflammatory diseases, biopsy involves taking a small sample of tissue for examination under a microscope by a pathologist. Depending on the location of the suspicious tissue, the procedure may be performed with a needle or during endoscopy or surgery.
• Pulmonary function test – This specialized test measures lung volume, capacity and gas exchange, which can help a physician diagnose respiratory conditions, such as asthma, COPD and pulmonary fibrosis.
• Genetic testing – This lab test involves analyzing cellular DNA to identify changes or mutations that could indicate genetic disorders or inherited conditions. It can be used to diagnose conditions such as cystic fibrosis, Down syndrome and certain types of cancer, and to assess genetic risks for future health.
• Sleep studies (polysomnography) – This diagnostic test records brain waves, heart rate, breathing patterns and other bodily functions during sleep. It can help a physician diagnose a sleep disorder, such as sleep apnea, insomnia and restless leg syndrome, or recommend appropriate treatment for better sleep health.

Our specialists use these advanced diagnostic tests to provide accurate diagnoses, guide treatment decisions and plan care for a wide range of complex pediatric conditions.

Services Offered for Complex Pediatric Conditions

The Muma Children’s Hospital Complex Care Program offers the full spectrum of services to patients depending on their needs. In addition, we help children stay healthy and meet their developmental goals through:

• Primary care, including well-child checkups, physical examinations and vaccinations
• Developmental evaluations
• Telehealth visits
• Illness visits
• A dedicated nurse phone line for nighttime and weekend concerns
• Management of chronic medical issues
• Coordination with subspecialists
• Coordination with the TGH hospital team
• Coordination with home health companies, medical daycare centers and medical supply companies

Support Services for Children With Complex Conditions

Children with complex health conditions often benefit from supportive care, which can help manage their medical care, improve their quality of life and address various physical, mental, emotional, social and developmental challenges. The Muma Children’s Hospital Complex Care Program offers:

• Physical therapy (PT) – Can improve muscle strength, movement and coordination.
• Occupational therapy (OT) – Focuses on developing the skills necessary for daily living, such as eating, dressing and writing.
• Speech-language therapy – Addresses communication, language and swallowing issues, which may arise from developmental or neurological conditions.
• Nutritional counseling – Provides support for children with feeding issues, food allergies or medical conditions that impact nutrition, helping to ensure proper growth and development.
• Inpatient psychological and behavioral therapy – Assists children and their families in managing emotional, behavioral and mental health issues related to complex health conditions.
• Care coordination – Can manage appointments, treatments and communications among multiple specialists to ensure comprehensive care.
• Social work – Assists with coordinating resources and navigating insurance or financial issues related to complex medical care.
• Inpatient pediatric pain management – Focuses on relieving chronic pain and improving the quality of life for children with cancer, genetic disorders and severe injuries.

Research and Clinical Trials

Although the Muma Children’s Hospital Complex Care Program does not run clinical trials, we can provide our patients with access to pediatric subspecialists who are leading important research studies and facilitate referrals for potential enrollment.