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There are many ways you can help children and their families get the care they need.
The mission of the Advanced Fetal Care Center (AFCC) is to provide the finest diagnosis, ongoing screening and care for a mother carrying a baby with a confirmed or suspected congenital anomaly. For these families, our center offers entry to a continuum of care and support that extends throughout childhood--from prenatal diagnosis and counseling, through treatment and long-term follow-up. On rare occasions, our team will recommend and perform intervention during fetal life. For example, we partner closely with our consultants in the Fetal Cardiology Program to correct or prevent defects of the fetal heart in utero. Our physicians, who represent all pediatric sub-specialty areas, work with a wide range of babies with anomalies. Together, they have developed ground-breaking procedures in fetal medicine and surgery. Call 1-866-FETALCARE (1-866-338-2522) to speak with a member of our team.
From National Public Radio
AFCC co-director and cardiology Wayne Tworetzkty, MD explains a stunning, and stunningly precise, fetal intervention: one designed to help a heart on the road to a hypoplastic left ventricle take a turn for the better.
The International Federation for Spina Bifida and Hydrocephalus (IF)
IF's membership consists of 38 regional and national umbrella organizations for Spina Bifida and Hydrocephalus. Its mission is to improve the quality of life of people with Spina Bifida and Hydrocephalus throughout the world and to decrease the prevalence of Spina Bifida and Hydrocephalus by primary prevention.
Christopher A Walsh Laboratory
An organization that is researching the development and function of the cerebral cortex and genes involved, as well as, educating on genetics and DNA.
Elliana Grace Foundation
Established by Elliana's parents, this site is for families facing the diagnosis of a Congenital Heart Defect. Dan and Brita "also want to help hospitals like Boston Children's Hospital continue to progress in their quest for new and progressive medical treatments for children with Congenital Heart Defects."
Fetal Hope Foundation
The Fetal Hope Foundation's mission is to provide support, provide information, fund research, increase awareness and be an outlet for leading medical information pertaining to fetal distresses and syndromes.
Foundation for Faces of Children
The FFC is a non-profit, volunteer-led organization supporting and offering educational resources to families and children with craniofacial conditions.
Massachusetts Down Syndrome Congress
Established in 1983, this non-profit, all-volunteer organization's mission is to offer information, advocacy and networking to people and families with Down syndrome.
Tef Vater International Support Group
Established in 1990 by a family dealing with a newborn diagnosed with Esophageal Artesia, Tef Vater is dedicated to offering support and insight on this fetal anomaly.
This non-profit organization is run by families and friends of affected children to support families of children with Gastroschisis.
The TTTS foundation provides immediate information about Twin to Twin Transfusion Syndrome including education, insight and support.
The Triplet Connection
Founded in 1983, this international organization is "network of caring and sharing for multiple birth families." This site offers comprehensive information and reading material to provide insight for families expecting triplets or more.
The National Share Office
A nationwide, non-profit organization that is dedicated to serving those influenced by the loss of a baby through early pregnancy loss, stillbirth or during the first few months of life.
The Compassionate Friends
A nationwide, non-profit organization that is dedicated to assisting families toward a positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.
Center for Loss in Multiple Birth (CLIMB)
An international network of parents that offers educational materials and support systems to aid in the loss of one or more children during a multiple pregnancy.
A non-profit organization that is dedicated to providing grief support and education following the loss of a baby, including miscarriage, ectopic pregnancy, stillbirth and infant death.
Founded in 1995, by a parent with a child born with Congenital Diaphragmatic Hernia, this solely volunteer, non-profit organization offers support to those effected by a child born with CDH.
Spina Bifida Association (SBA)
The Spina Bifida Association (SBA) serves adults and children who live with the challenges of Spina Bifida. Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect. Its tools are education, advocacy, research, and service.
American Cleft Palate-Craniofacial Association
The mission of CPF is to enhance the quality of life for individuals affected by cleft lip and palate and other craniofacial birth defects.
Massachusetts Down Syndrome Congress (MDSC)
The mission of the MDSC is to ensure individuals with Down syndrome in Massachusetts are valued, included, and given the opportunities to pursue fulfilling lives by providing information, networking opportunities, and advocacy for people with Down syndrome and their families, educators, health care professionals, and the community-at-large.
Our goal is to provide a comprehensive resource to the families and friends of children with limb differences.
Our mission is to improve the treatment of children born with clubfoot through education, research, and improved access to care.
The Devon Nicole House Foundation
The Devon Nicole House is a non-profit 501(c)3 foundation dedicated to providing a home-away-from-home for families that have children receiving care at Boston Children's Hospital. We support The Devon Nicole House at Boston Children's Hospital and look to provide additional help to families in need.
Little Hearts, Inc. is a national organization providing support, education, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.
Compassion is a guiding principle throughout the care process. The Advanced Fetal Care Center believes in honest and open discussions about test findings and treatment options. We know that this information may be anxiety provoking and sometimes overwhelming.
Our clinical social worker is available for confidential supportive counseling around fetal diagnosis, decision-making, coping with high-risk pregnancy, hospitalization, and chronic illness-related issues. Social workers at Boston Children's Hospital are members of the multidisciplinary care team and are trained, licensed professionals who provide a spectrum of psychosocial services that enhance the quality of care for patients and their families within the hospital and in a variety of community settings.
Our social worker is also available to you as a resource person and can provide information on community resources, referrals to mental health professionals in the community, and access to hospital-based support related to accommodations and other costs associated with your hospital visit.
Boston Children's Hospital is also home to the Center for Families which is a resource center for families and coordinates a number of different programs. One program in particular that is used frequently by AFCC patients is the Family to Family Program.
Often the best support comes from parents who have been there before. Our Family to Family network matches families now coming through the AFCC with trained volunteers who have a child with a particular health concern, for information and emotional support.
To get connected with a support family, discuss your interest with the AFCC social worker or nursing staff who will provide you with a release of information form to complete to initiate the match. This release insures your privacy and gives the Family to Family Program permission to provide basic information to the support volunteers to prepare them for speaking with you.
Once that step is complete you will receive a call from the Family to Family Program Coordinators, Paula Langone or Monique Mello, who work in the Center for Families and will set you up with your match. Matches usually connect by phone for one to three conversations to provide you the opportunity to ask questions, gather information and support. It is important to remember in speaking with another family, that not every patient and/or family story is the same, but that family's experiences may have similar themes, emotions, and potential strategies for coping that can be helpful to you.
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.”