A parent and caregiver resource guide for families living with congenital heart disease.

A heartbeat. Hearing that precious beat of your child’s heart in utero often marks the beginning of a sacred connection between you and your child.

But what happens when your child’s heart is broken because of a congenital heart defect? Sadly, congenital heart defects happen in about 40,000 babies (1 in 110) in the U.S. each year. Receiving a CHD diagnosis for their child can leave parents and caregivers feeling scared, uncertain and alone. And while health care providers play an essential role in mending broken hearts in the hospital or doctor’s office, so much of the care happens at home with families.

To help these families, Mended Little Hearts and St. Jude Medical partnered to create a one-of-a-kind, digital resource guide for parents and caregivers of children with congenital heart disease. Medical professionals and parents worked together on this guide to provide accurate and honest information that addresses the tough feelings, questions and concerns parents and caregivers may have. Our hope is that this guide empowers families to feel confident as they care for their child with congenital heart disease. This can be frightening and challenging, but as parents who are going through this can tell you, it is possible to thrive.

Most importantly, this guide lets you know you’re not alone.

Digital English   Digital Spanish

Digital PDFs

Bereavement Photo

Bereavement

Mended Little Angels is a program of Mended Little Hearts (a program of The Mended Hearts, Inc), which is a special program offered to parents and family members who have lost a child or loved one to a congenital heart defect (CHD).

Visit Request Photo

Visit Request

Our Visiting Program serves heart families while they are inpatient. It can be a very emotional and difficult time while your child is in the hospital. MLH’s accredited visitors are there to listen, empathize and offer support to families. Our visitors are Heart parents, who can relate and understand the concern of other parents during their time in the hospital. Being inpatient can be an overwhelming experience and we hope that a friendly face and a listening ear over a cup coffee can offer some comfort during this time.