Advanced Fetal Care Center | Patient Resources

Many of our patients are in different phases of their pregnancy and faced with a diverse range of medical diagnoses, decisions and concerns. You may have just heard about a potential diagnosis and are attempting to learn more. You may have been counseled extensively and are making decisions about your pregnancy. You may be considering treatment options or awaiting delivery. The emotional stress related to the anxiety, fear, anger, sadness, and overall grief that your pregnancy has been irrevocably changed can be exhausting physically, mentally and emotionally.

The clinicians in the Advanced Fetal Care Center (AFCC) believe in honest and open discussions about test findings and treatment options. We know that this information may be anxiety provoking and sometimes overwhelming. That's why 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 your care team and are trained, licensed professionals who provide a spectrum of psychosocial services that enhance the quality of your care. Our social worker is also available to you as a resource 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.

We also recommend the following resources:

American Cleft Palate-Craniofacial Association
The mission of this organization is to enhance the quality of life for individuals affected by cleft lip and palate and other craniofacial birth defects.

Bridging the Gap of EA/TEF
A family-to-family support and resource network.

CHERUBS
Founded by a parent with a child born with congenital diaphragmatic hernia, this solely volunteer, nonprofit organization offers support to families who have a child affected by this condition.

The Devon Nicole House is a nonprofit foundation dedicated to providing small grants for unexpected or uncovered expenses for families that have children receiving care at Boston Children's Hospital.

Ethan M. Lindberg Foundation
Established by Ethan's parents, this organization provides practical support, grants and long-term housing to families at Boston Children's Hospital facing congenital heart disease

Foundation for Faces of Children
This is a nonprofit, volunteer-led organization that supports and offers educational resources to families and children with craniofacial conditions.

Incredible Teddy Organization
This foundation assists children born with CDH, as well as their families.

Limbs4Kids
This organization supports children and young people with limb differences and their families.

Little Hearts, Inc.
Little Hearts, Inc., is a national organization that provides support, education, resources, networking and hope to families affected by congenital heart defects.

Massachusetts Down Syndrome Congress
This nonprofit, all-volunteer organization's mission is to offer information, advocacy and networking to people and families with Down syndrome.

MOOs (Mothers of Omphaloceles)
Founded by three parents of babies with omphaloceles dedicated to providing information and support.

Spina Bifida Association
The Spina Bifida Association is a national organization committed to promoting the prevention of Spina Bifida and enhance the lives of all affected.

The Twin-to-Twin Transfusion Syndrome Foundation
This foundation provides immediate information about twin-to-twin transfusion syndrome including education, insight and support.