22q Deletion Syndrome (DiGeorge Syndrome, VCFS) Team Program

A Multidisciplinary Approach to Care

Our program individually coordinates your child’s care, allowing your family to see every specialist needed to identify the clinical needs of your child during a single visit. Specialists in the 22q (DiGeorge syndrome, VCFS) program include clinicians from: 

Cardiology

Congenital heart defects are present in about 80% of children with 22q deletion syndrome (DiGeorge syndrome, VCFS). The defects could be mild, like a heart murmur, or serious enough to cause problems like poor circulation and/or difficulty breathing. A cardiologist will use ECG and echocardiography to check for heart problems. If one is discovered, your child will see a heart specialist at The Heart Center at Children’s Health to determine the best possible treatment options.

Complex Care

A Complex Care pediatrician takes a holistic, family-centered approach to a child's care when multiple conditions and subspecialists are involved. The Complex Care pediatrician will work with the team to create a comprehensive care plan for each child that will be shared with both the family and the primary care provider. Additionally, Complex Care will help provide condition specific anticipatory guidance and action planning, reinforce caregiver education on their child's conditions, along with reconciliation of medications and management plans. 

Developmental and Behavioral Pediatrics

Children with 22q deletion syndrome (DiGeorge syndrome, VCFS) may have differences in how they learn and may need extra help in school. Your child’s care team will test for any learning delays and create plans to enhance your child’s learning. 22q deletion syndrome (DiGeorge syndrome, VCFS) related disorders also increase the risk of behavior and mental health problems. This can include attention deficit hyperactivity disorder (ADHD), pediatric autism and developmental disabilities, anxiety and depression. The care team will regularly check in about your child’s behavior at home and school. If there are concerns, a neuropsychologist or psychiatrist will evaluate your child and recommend appropriate therapies. 

Ear, Nose and Throat (ENT) and Audiology

Children with 22q deletion syndrome (DiGeorge syndrome, VCFS) often have issues with breathing, swallowing and hearing. They may also have recurring ear and sinus infections. An ear, nose and throat doctor (ENT) can diagnose issues and create age-appropriate treatment plans. An audiologist will perform regular hearing tests to monitor your child’s hearing. 

Endocrinology

Some children with 22q deletion syndrome (DiGeorge syndrome, VCFS) have low calcium levels. This is common after birth but can also happen during stressful times. The multidisciplinary team will help monitor these calcium levels and, if needed, will provide care with endocrinology specialists. 22q deletion syndrome (DiGeorge syndrome, VCFS) can also affect a child’s growth. Some children may need growth hormone therapy. The endocrinologist will help monitor your child’s growth to ensure they’re meeting milestones.

Genetics

Genetics is the branch of medicine that helps with conditions caused by changes in people’s DNA. A geneticist will explain your child’s genetic test results and answer any questions you have about 22q deletion syndrome (DiGeorge syndrome, VCFS) and your child’s care. They can also talk about the odds that another child in the family may be born with the syndrome, and whether other genetic testing is needed.

Plastic Surgery

More than half of children with 22q have abnormalities of their palate, including a cleft lip or submucous cleft palate. These conditions can be hard to detect and can lead to many complications early in a child’s life, including feeding and speech. Rest assured, the multidisciplinary team at Children’s Health treats more patients with a cleft palate each year than any other program in North Texas.

Speech Language Pathology

Children with 22q deletion syndrome (DiGeorge syndrome, VCFS) often have problems with speech. This can be due to a cleft of the palate, which would require surgical repair by a plastic surgeon, or due to difficulty coordinating the palate, tongue and lips during speech. The speech and language pathologists (SLP) here will regularly check your child’s ability to make sounds and speak as they grow older. They may make recommendations for speech therapy services or speech imaging for surgery planning. The speech and language pathologists also assess feeding skill development and swallowing concerns. At Children’s Health, we offer a specialized Cleft Lip and Palate program.

Immunology

Children with 22q deletion syndrome (DiGeorge syndrome, VCFS) often have an associated immunodeficiency. This is caused by problems with the thymus, a tissue in the body where important immune cells called “T-cells” are made. The severity of this immune deficiency is variable – sometimes very mild, and only rarely severe. The multidisciplinary team includes immunologists who will evaluate your child’s immune system to determine the severity of this T-cell deficiency. While in most cases no treatment is needed, a careful evaluation and an assessment of the immune system’s health is needed to determine the best clinical course. The immunologist will introduce different clinical strategies to limit the severity of infections in an individualized manner for your child.

We take a customized approach to provide the best opportunities for patients with 22q deletion syndrome (DiGeorge syndrome, VCFS) from birth to adulthood. Because the condition is so varied in the way it affects children, treatment is individualized with regular assessments of the different aspects of the medical condition. In addition, the team assesses and provides services and support to optimize speech development and to ensure the best learning environment for the child.