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There are many ways you can help children and their families get the care they need.
Boston Children's Hospital cares not only for patients' medical needs, but for the emotional and quality of life needs for both patients and their families.
Our goal is to create a safe and comforting environment for you and your family. We know that unfamiliar places, especially hospitals, often create anxiety and fear, and that this is not an easy time or task for loved ones who may have their own fears and concerns about the situation. Our family support services will help address many of those worries.
Our family-support teams include:
Patient care coordinators, who are available to assist with anticipated medical supply needs. Prior to admission, the coordinator will communicate with your insurance company. In addition, at the time of discharge the coordinator will meet with you to discuss home health care needs.
Clinical dietitians, who can help with your child's specific diet concerns. Many newborns with congestive heart disease require special high-calorie formula. Our dietitians can assist you with this and other dietary needs.
Social workers, who provide confidential support to parents and guardians during a child's hospitalization. They also assist with accessing community resources for families.
Resource specialists, who are available to assist families during hospitalization, with information about services available through the hospital and accommodations such as housing and transportation available in and around the city of Boston.
Child Life specialists, who help children cope with their hospitalization. They are also available to parents who would like to discuss issues related to siblings or child development. Child Life specialists hold bachelor's or master's degrees in the areas of child life, child development, special education or recreation therapy. They are also available to your child before they come into the hospital, for reassurance purposes. The Child Life specialist on 6 East can be reached at 617-355-6550.
Our family-centered services include:
Our Cardiac Neurodevelopmental Program is one of the only programs in the nation providing comprehensive consultation, assessment and intervention services for patients with congenital heart disease and their families.
The Boston Children's Heart Center community on Facebook connects patients and families with others going through a similar journey.
The Boston Children's chaplaincy has chaplains representing a variety of faiths, including Islam, Judaism, Protestantism and Roman Catholicism, who are available 24 hours a day to offer spiritual and emotional support, with sensitivity to families' religious traditions and primary language. Patients and families can request a chaplain's visit by calling the office at 617-355-6664, or by speaking with a nurse.
The Center for Families is dedicated to helping families find information and resources to assist in understanding their child's medical condition and to help participate in their care. The Center offers a place to:
find information on a medical condition, illness and treatment
learn about hospital and community resources
use computers to email home, write or search the Internet
request family-to-family support
borrow books with topics such as medical conditions, child development, parenting and sibling issues
consult with a lactation specialist
attend a workshop or seminar, such as "CPR for Infants and Children"
enter the Gift Basket and Book of the Month raffles
access special programs such as Paw Prints, the hospital's therapy dog visitation program
get information about accommodations that are available to Children's patient families, including hotels, hospitality homes and dormitory-style rooms at the hospital for parents of children in the Cardiac Intensive Care Unit
Family information groups meet weekly on 6 East to answer specific questions concerning discharge planning, developmental issues and life after hospitalization. This group is facilitated by the cardiac social worker and child life specialist.
The hospital's Behavioral Medicine Clinic specializes in helping families adjust to acute and ongoing medical situations. Our experienced team of pediatric psychologists, psychiatrists and other mental health professionals provides effective and compassionate evaluations, education, counseling and therapy.
The Experience Journal is a website created by Boston Children's staff, allowing children, families and other caregivers to read about the experiences and feelings of other patients who have had heart disease.
More family support services are available, too.
Today it's been 5 years since my son Matthew's A.V. Canal repair. I remember the nurses: Shannon, Jaime, and Patrick....They were so good with Matthew and with my husband and I.
If it wasn't for Children's Hospital and the Cardiac wing he wouldn't be here. Thank you all for what you have done for us and giving him a chance to grow in front of our eyes! Thank you Dr. Mah, Dr. Baird, and Dr. de Ferranti we owe you the world.
5 years ago today, I placed my one week old son in Dr. Emani's hands to repair his COA. I remember it like it was yesterday, and I'm thankful every day for the care we received at the Heart Center at Boston Children's Hospital.
1 year ago today Dr Baird performed open heart surgery on Cayman. It did NOT slow him down. Today his heart is as good as new and he barely even has a scar. Thank you Dr Baird and everyone on the cardiac floor at Boston Children's Hospital.
Two years ago today we were at Boston Children's Hospital and our daughter, Emily, was having an aortic stent placed. We were told it would have to be replaced by the time she turned 2 (which was last June) but its still in place and working beautifully. We thank God every day for the amazing work of Dr. Gerald Marx and Dr. James Lock.
This weekend we celebrated our beautiful daughter, Mikayla's 1st birthday and that’s thanks to the amazing surgeons and staff on the 8th floor!! Mikayla was born with a rare diagnosis of Pentalogy of Cantrell which included several heart defects.
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.”