Hydrocephalus Program Patient Resources

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Contact Hydrocephalus Program

  • 1-617-355-6008
  • International: +1-617-355-5209

Your child’s Hydrocephalus Program appointment

Frequently Asked Questions

Q: How can I schedule an initial appointment with the Boston Children's Hydrocephalus Program?

A: You may request an appointment by calling us at 617-355-6008 or by using our online "Request an appointment" form.

Please be sure you have the following information on hand:

  • your child’s full name, address, and date of birth
  • your (or, if you are not the child’s parent/legal guardian, the official guardian’s full name, address, phone number and relationship to the child).
  • your insurance provider’s name(for example, Blue Cross Blue Shield of Massachusetts), the name of the specific plan covering the child (for example, HMO Blue), and your subscriber identification number
  • the name, address, and phone number of your child’s primary care physician
  • the name, address, and phone number of your child’s referring physician (if different from the primary care provider)
  • a basic summary of your child’s symptoms and medical history, including any prior surgeries or treatment procedures

Q: What if I don’t have a referral for my child’s appointment?

A: If you don’t have a referral from your child’s primary physician, you may be asked to reschedule your initial Hydrocephalus Program appointment until the referral comes through.

Or, you will have the option to sign a waiver and pay a $250 waiver fee. (We recommend that you pay the waiver fee by check or credit card, as this will make stopping payment easier should you get a referral by the next business day after your child’s appointment. We are able to refund your waiver fee if you call us at 617-355-6015 with the necessary referral information by noon the next business day).

If you get a referral more than 24 hours after your child’s appointment, you will have to wait for your insurance company to pay for the claim. This may take up to 90 days. Your waiver fee will be automatically returned to you once the insurance company pays the claim. (Unfortunately, since this process is fully automated, we are unable to expedite the return of the fee.) If, after 90 days, you still have not received your refund, please call our billing company at 1-800-853-8110.

Q: What should I tell my child before his appointment?

A: Your child’s age and individual circumstances may determine which information (and the amount of information) you choose to share before the initial appointment. Guidelines for a beneficial conversation might include:

  • explaining that the doctor you will be meeting is going to help find the best treatment so your child can feel better
  • visiting the Boston Children’s web site and taking a “virtual tour” of the hospital with your child
  • reassuring your child that you will be there throughout the appointment
  • encouraging your child to ask any questions that come to mind, both before and during the appointment

Q: What should I bring to my child’s appointment?

A: When you make your initial appointment, a member of the Hydrocephalus Program staff will go over everything you’ll need on the day of your visit. A good checklist of take-along items should include:

  • the name of the doctor you will be seeing
  • the name and floor of the Boston Children’s building you will be visiting
  • the name and telephone number of your referring physician
  • your insurance card(s)
  • co-payment for your insurance, if applicable
  • referrals or authorizations from your child's primary care doctor's office, if applicable
  • all medical or personal records, such as x-rays or lab tests, pertaining to your child’s condition
  • a list of your child's medications
  • a list of questions you have for the doctor and staff (if appropriate for your child's situation and maturity, you may want to have him or her come up with questions that he or she is curious about)
  • your child's and your Social Security numbers (for insurance purposes)
  • any forms mailed to you by the Hydrocephalus Program
  • books, games, snacks, formula, diapers, a change of baby clothes or other necessities (please do not bring food if your child must fast for testing)

Q: I would like copies of my child’s x-rays, MRIs or CT scans taken at Boston Children’s. How can I request these?

A: All requests for films taken at Boston Children’s need to go through the hospital’s film library. You may be charged a fee, depending on the number of copies you need. Please call the film library at 617-355-6283 to place an order.

Q: I received a bill for my child’s Hydrocephalus Program appointment. Who should I call with questions?

A: Please call 617-355-3397 with billing questions

Q: What if I have to reschedule my child’s appointment?

A: If you need to reschedule an appointment, please call 617-355-6008. (Please give at least 24 hours' advance notice whenever possible.)

Q: My child’s health problems can be overwhelming. Does Boston Children’s offer a service that can help me find the information and additional support I may need?

A: Our Center for Families is dedicated to helping families find the information and resources they need to better understand their child’s medical condition and take part in their care. All patients, families and 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.

Information and support for children and teens

Information and support for parents and families

Please note that neither Boston Children’s Hospital nor the Hydrocephalus Program at Boston Children’s unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

Patient Resources 

  • Boston Children’s Clinical Genetics Program provides diagnostic services and genetic counseling for patients and families with birth defects and other developmental problems. Please call 857-218-4637 to learn more.

  • The hospital’s Complex Care Services deliver essential medical care to children with birth defects, genetic disorders and other multifaceted health care needs. Call 617-355-6162 for more information.

  • The Experience Journal was designed by Boston Children’s psychiatrist-in-chief, David DeMaso, MD, and members of his team. This online collection features thoughts, reflections and advice from kids undergoing medical experiences, as well as their families and clinicians.
  • Boston Children’s Psychiatry Consultation Service is comprised of expert and compassionate pediatric psychologists, psychiatrists, social workers and other mental health professionals who understand the unique circumstances of hospitalized children and their families. The team provides several services, including:
    • short-term therapy for children admitted to one of our 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.
  • Boston 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 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 Boston 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.
  • For children and families affected by life-threatening illness, our Pediatric Advanced Care Team (PACT) is available to provide supportive treatments intended to optimize the quality of life and promote healing and comfort. In addition, PACT can provide emotional support and help arrange end-of-life care when necessary. Please call 617-632-5042 for more information.
  • Boston Children's International Center is a dedicated 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.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944