The Velocardiofacial Syndrome Clinic at Children’s provides diagnostic and treatment services for children up to age 21 who have a deletion of chromosome 22 (22q11). Velocardiofacial Syndrome may also be referred to as DiGeorge, Shprintzen or Catch 22 Syndrome.
What is Velocardiofacial Syndrome (VCFS)?
Characteristics of Velocardiofacial syndrome (VCFS) often include:
- “Velo” refers to the palate/roof of the mouth. Patients with VCFS may have a cleft palate or submucous cleft palate
- “Cardio” refers to possible heart defects that may include ventricular septal defect (VSD), pulmonary stenosis, and tetraology of Fallot.
- “Facial” refer to the distinct facial features that patients with VCFS may exhibit including an elongated face, prominent nasal bridge and nasal tip, almond shaped eyes, and small ears
In addition, children with VCFS may have learning, behavioral, hearing, endocrine, immunology and speech-language concerns. At Children’s, we believe that the sometimes complex medical needs of a child with VCF are best served through a multi-disciplinary team.
What to expect during a Velocardiofacial Syndrome Clinic Visit
During a VCFS Clinic, your child will be seen by a multi-disciplinary team of specialists that may include:
- Child Psychology
- Genetic Counseling
- Pediatric Nurse Practitioner
- Pediatric Otolaryngology/Ear Nose & Throat (ENT)
- Speech-Language Pathology
If your child is scheduled for a full-day evaluation please plan on spending the day with us. Depending on your child’s needs the morning and early afternoon will consist of one-on-one evaluations with the specialists listed above.
The afternoon team meeting, which is typically 30 minutes in length, consists of a visit summary provided by the clinic’s medical director, genetics and a nurse practitioner. During that time, the plan of care will be discussed and recommendations will be reviewed.
At the end of your child’s visit, you will receive a summary of recommendations including referral information and follow-up appointments. A copy of the team report will be sent to you, your child’s primary care provider, and other providers at your request.
Speech-only VCFS Clinic visits are typically recommended for patients who are being monitored for ongoing resonance concerns and/or possible “speech” surgery. It is a 20-30 minute appointment with the speech-language pathologist that focuses on evaluating your child’s speech and resonance, monitoring progress in therapy and making recommendations regarding speech therapy and/or surgical intervention to improve communication skills.
What to bring to a Velocardiofacial Syndrome Clinic Evaluation
- Copies of recent medical records from non-Children’s providers
- Speech therapy records including IEP and/or outpatient progress notes
How to schedule an appointment
Appointments for all of our Cleft & Craniofacial Center clinics may be scheduled by contacting the clinic assistant at (612) 813-6888.
Frequently Asked Questions
Why does my child need to see the Speech Pathologist if he/she is already in speech therapy?
The VCFS Clinic Speech-Language Pathologists (SLP) are specialists in the unique concerns associated with velocardiofacial syndrome. During an evaluation, the team SLP will talk to your child to evaluate his/her articulation and resonance and review your child’s therapy plan. The team SLPs work closely with speech pathologists in the community to ensure that your child is receiving appropriate speech therapy. In addition, the SLP will serve as a liaison between your child’s speech pathologist and the VCF Clinic.
Can you help me find a pediatric dentist?
Yes, we can. The VCFS Clinic works with a number of pediatric dentists throughout the state and we can recommend them to you. Please ask one of the staff for their business card.
What causes Velocardiofacial Syndrome?
The exact cause of velocardiofacial syndrome is unknown however we do know that children who have VCFS are missing a small piece of chromosome 22 (22q11.2). There is a genetic test, called “FISH analysis”, that is used to identify this partial chromosome deletion. During your child’s VFCS Clinic visit, you will meet with a geneticist and have the opportunity to discuss any questions or concerns you may have.
The Cleft Palate Foundation “Cleftline”