Microcephaly

Here at Children’s Hospital Boston, we specialize in innovative, family-centered care. From your first visit, you’ll work with a team of professionals who are committed to supporting all of your family’s physical and psychosocial needs.

What are the treatment options for microcephaly?
Microcephaly is a lifelong condition for which there is no cure. Some children with the disorder don’t experience any difficulties beyond a smaller-than-normal head size (and possibly a smaller-than-average height): They don’t need  any treatment beyond routine check-ups and ongoing head measurements.

However, the effects of the disease vary a great deal from child to child: Some cases of microcephaly lead to serious learning and speech disabilities, difficulties with neurological functions and physical complications, like seizures and facial deformities. For these children, treatment is geared toward managing the complications of microcephaly rather than the condition itself.

Children’s Hospital Boston is home to a multidisciplinary team of experts who are dedicated to providing all of the support, assistance and information your child and family need. Your treating clinician will work with you to formulate a customized treatment plan that helps your child reach his fullest potential in school, at home and in his relationships.

Besides medical treatment, what types of support might my child need as he grows?
The exact support your child will require depends on his specific symptoms and the severity of his disease. Your treatment team will advise you on the best resources to meet your child’s needs.

In general, children with microcephaly can benefit from:

• physical therapy, to help improve strength, movement and coordination
• occupational therapy, to help build comfort and confidence performing day-to-day tasks
• speech therapy, to help improve language, voice and swallowing skills
• psychological counseling, to help them with their self-esteem and feelings about their medical experiences

Coping and support 

When your child has a serious condition like microcephaly, your family is dealing with many different concerns and worries. Not only are you focused on meeting all of your child’s medical needs; you are also grappling with a significant emotional and psychological toll that affects every member of your family.

In addition to the clinical information offered on this page, Children’s Hospital Boston has several other resources designed to give your family comfort, support and guidance. 

Patient and family resources at Children’s

• Children’s Center for Families is dedicated to helping families locate the information and resources they need to better understand their child’s particular condition and take part in their care. All patients, families and health professionals are welcome to use the center’s services at no extra cost. The Center for Families is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
   
• The hospital’s Complex Care Services provides care for children with complex medical conditions in both inpatient and outpatient settings. CCS partners with the child's family, primary care physician and treatment team specialists to ensure comprehensive, coordinated and centralized medical care. Please call 617-355-6162 for more information.
   
• Children’s Behavioral Medicine Clinic helps children who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:
  • being sick
  • facing uncomfortable procedures
  • handling pain
  • taking medication
  • preparing for surgery
  • changes in friendships and family relationships
  • managing school while dealing with an illness
     
• The Experience Journal was designed by Children’s psychiatrist-in-chief, David DeMaso, MD, and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about living with a variety of medical conditions, the “befores” and “afters” of surgery and going through many other medical experiences.
   
• Children’s Psychiatry Consultation Service provides several services, including:
  • short-term therapy for children admitted to one of the hospital’s inpatient units
  • parent and sibling consultations
  • teaching healthy coping skills for the whole family
  • educating members of the medical treatment team about the relationship between physical illness and psychological distress
     
• Children’s Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide.” (Adobe Acrobat required to view and download) Topics in the booklet include:
  • talking to your child about her condition
  • preparing for surgery and hospitalization
  • supporting siblings
  • taking care of yourself during your child’s illness
  • adjusting to life after treatment
     
• The Children’s chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions—who will listen to you, pray with you and help you observe your own faith practices during your child’s treatment.
   
• Children's International Center is a resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.

Helpful links

Please note that neither Children’s Hospital Boston, the Departments of Neurology and Neurosurgery nor the Fetal-Neonatal Neurology Program at Children’s  unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

• Foundation for Children with Microcephaly
• Microcephaly Awareness Facebook Page
• Microcephaly Parent/Caregiver Support Group (Yahoo! Groups)
• Mild Disability Microcephaly Support Group (Yahoo! Groups)
• National Institute of Neurological Disorders and Stroke: Microcephaly Information Page
• Robin’s Microcephaly Support Group (Facebook)