We provide support for families facing CHD through bereavement care for those coping with loss and events that help build meaningful community connections. Additionally, we offer online and phone support, ensuring you always have a compassionate network to rely on, no matter where you are.
Talk to someone who “Gets it.” Connect with other parents with a child who has a similar diagnosis through the Facebook Group.
The IHH Facebook Group is for registered IHH Members who are parents and direct caregivers of children with heart conditions and for adults with CHD's. Much of the group's interaction takes place online where members can interact, discuss heart related issues, laugh, cry, and find support. To join the conversation, please complete the Membership Application, then request to join the IHH Facebook Group. If you are not a direct caregiver or adult with a CHD, please "Like" our Facebook Page or watch the website to receive updates and information about IHH.
IHH holds events and activities throughout the year where families can come together to learn, celebrate, and support one another.
EventsIn addition to what IHH offers for those families that have children living with CHD’s, IHH also offers a Facebook Group just for Angel families and activities for those Angel Families that are dealing or have dealt with the passing of their loved one. Our grief can feel overwhelming at times…our hearts may feel shattered and broken. We may feel the need to share our grief with others, in a nonjudgmental, open forum. Perhaps we would like to share memories of the one we love who has died. Or maybe we just need reassurance that our tears, our pain, our anger, and any other feeling that we may experience in relation to our grief is okay. This group offers a way to share our thoughts, experiences and feelings in order to find guidance, direction and/or advice. Join IHH and include Angel information to be added to the Angel FB Group.
Intermountain Healing Hearts has over 1,000 members who, just like you, have had to sit in the "bad news" room at Primary Children's Medical Center (or other hospitals) and been told that they or their child has a very special heart. Some were diagnosed in-utero, others shortly after birth or even as an older child or adult. We know what it's like to spend weeks or months in the hospital, and the challenge of bringing a child home on medications, feeding tubes and oxygen.
You are not alone in this Heart journey. We "get" you and want you to know that whatever you or your child's struggles, Intermountain Healing Hearts is a safe place to talk about your fears, concerns, ask for advice, and be understood.
Members of IHH have or have children with one (and often more) of the 35 known CHDs including: VSD, ASD, HLHS, HRHS, CoArc, Tetrollogy of Fallot, Tricuspid Atresia, Heterotaxy, Heart transplant, cardiomyopathy, DORV, TGA, etc.
Every child has a different experience on their CHD journey. Read the stories and experiences of some of our members by following their blogs.
Join IHH and receive a call from one of our Parent Mentors who can talk with you about their experiences at the hospital, raising a child with a CHD, and discuss some of the concerns you may have.
Are you expecting a baby with CHD or preparing for your child's upcoming catheterization or heart surgery? We've gathered helpful lists from our community of families to assist you in preparing for your hospital stay.
Download PDF Newborn Hospital ListsPack as if you are staying a month and then hope it is less time. I would recommend a big suitcase with long term stuff and a smaller bag that you can pack a few days worth of stuff in for when you sleep/shower at the hospital.
Here is some valuable advice from Heart Mommies that have walked the path before you. Take it all with a grain of salt, as opinions vary and different babies and situations call for different things. Hopefully this will help to make your path a little easier. Heart Hugs <3
Angel Families is a space of compassion and support for parents who have lost a child to CHD. Here, you will find resources to help navigate the journey of grief, connect with others who understand, and find comfort in the enduring love of your child.
For our IHH Angel Family Members we have a private Angel gathering each year. Please contact the Angel liaison or look for an email/facebook post for more information.
A group of photographers offering gentle and beautiful photography services in a compassionate and sensitive manner to provide some peace and comfort during the very difficult time of losing a child.
Ceremony held each December 6th at 7pm MST.
-Huffington Post
If you would like more information about this group and/or it's events, please reach out to our board of directors.
Empowering Adults with CHD: Support, Education, and Community
The mission of the IHH Adult Support Group is to foster a supportive community for adults living with congenital heart disease (CHD). We are dedicated to enhancing the lives of adult CHD survivors by offering emotional support and valuable educational resources.
A key initiative is our quarterly educational forum, which combines social interaction with informative sessions. This forum aims to help adults navigate the psychosocial complexities of living with a CHD diagnosis, offering a space for learning, support, and community building.
Intermountain Healing Hearts (IHH) provides support for families of children and adults with congenital heart defects and childhood onset heart disease. In addition to the emotional and physical support provided by the organization the IHH Family Heart Grant offers financial support to assist families with some of the monetary challenges associated with heart disease. Grants are for those seeking monetary aid for medical services received from September 1st, of the previous year to August 31st, of the application year.
This grant is not meant to be used to pay for experimental treatments, dental treatment, electronics, or other non-heart related medical treatments as funding is limited. Only one application per family, per year. Preference will be given to families who have not previously received a grant award, though it does not prevent families from applying and receiving grant monies again as we recognize situations are ever changing.
Applications will be reviewed by an advisory panel appointed by Intermountain Healing Hearts. If a grant is approved for treatment services must be provided by a trained, and if appropriate, licensed professional.
Financial need of the applicant will be evaluated by submission of a photocopy of the first page of the most recently filed Federal tax return (Internal Revenue Service 1040, 1040-A, or 1040-EZ). Social Security Numbers should be blacked out by the submitter. The following scale will be used to determine financial eligibility:
To apply for the IHH Family Heart Grant please submit each of the following:
Applications are due by October 31st by midnight of the application year and are required to be submitted electronically to grant@ihhearts.org. Grants will be awarded by a grant review committee. Grants will be distributed by check to the applicants before November 30th of the application year. Grant submission will remain confidential and receive a grant identification number. The applicant's identity will remain anonymous to the grant review committee.
According to the USNews.com, Primary's Children's is ranked among the top Pediatric Cardiology and Heart Surgery programs in the United States, with surgical results higher than the national average.
Camp Hawkins is a summer camp for children ages 7-17 with heart disease and their siblings. Volunteers, including an on-site medical staff, provide a fun, safe experience tailored to each child's needs and abilities. It is held at Camp Wapiti in Tooele, UT, the same location as IHH Family Heart Camp. They also have a Day Camp for kids ages 5 and 6.
Kids Wish Network grants wishes for children who are between the ages of 3 and 18 and have a life-threatening illness. Anyone can refer a child, including a family member, friend, nurse, doctor, or social worker. In addition, the organization's "Hero of the Month" program was developed to honor children also between the ages of 3 and 18 who have overcome life-altering circumstances and have stayed in or been treated at one of our Hero pediatric care facilities.
Providing important medical information in case you are in a car accident and are unable to communicate.
The Utah Parent Center is a private, nonprofit organization dedicated to helping parents help their children with disabilities to live included, productive lives as members of their communities. They are available to help with IEP's and answer other questions.
Understanding Social Security benefits when your child is diagnosed with a CHD
Trainees of the Utah Regional Leadership Education in Neurodevelopmental Disabilities (URLEND) program have created a brochure to provide teachers with knowledge of congenital heart disease (CHD) and associated behavioral, academic, and developmental needs of children with the condition. We hope this brochure enhances parent-to-school communication. Parents, feel free to use this resource by filling it out and sharing it with your child's teacher. We have also linked a survey to better understand the accessibility of this tool.