Learning that your child has a life-limiting illness can be devastating. It can be confusing and overwhelming to begin to understand what you may need medically and emotionally. Navigating the system along with your own feelings can be challenging and frustrating. Many parents want to seek out as much information as possible. Many parents report feeling alone and isolated. Families often struggle in finding information or support.
We hope to provide you an avenue to connect with others, gain support and the information you may need to explore your treatment options.
When a child faces a chronic condition or a serious illness, families often feel as if their life has become a roller coaster ride. While each family is unique and everyone’s journey will be different, we understand that you and your family may face very difficult questions regarding your goals of care for your child and uncertain times. Palliative care is here to provide support along the journey, no matter your treatment decisions or what the outcome may be.
Pediatric Palliative Care
"Pediatric palliative care seeks to relieve symptoms associated with a serious medical condition or its treatment and to enhance the quality of life for children and their families, addressing their unique psychological, social and spiritual needs." Source: The Institute of Medicine (IOM)3
Care is delivered through the collaborative efforts of an interdisciplinary team and serves as a critical link in care coordination, communication and helping the family to understand all the treatment goals and options…from diagnosis and throughout the course of a child’s treatment. The team works in collaboration with your child’s other health care providers and specialists, helping to provide seamless care coordination and communication, and aiding you in making informed choices about difficult medical decisions.
Care is customized for each patient and family, by allowing you to choose from a variety of available services, according to your needs. Through this continuing conversation, you and your child’s team can identify what your hopes and plans are for your child’s care, which will help the team deliver the care experience you hope for your child.
A team may consist of:
pediatric palliative care physicians
advanced practice nurses
child life specialists
expressive therapists/art, music, drama psychologists
Useful Links and Organizations
The International Children's Palliative Care Network (ICPCN) is a worldwide network of individuals and agencies working with children and young people with life-limiting and life-threatening conditions.
National Hospice and Palliative Care Organization (NHPCO) has published Standards of Practice for Pediatric Hospice and Palliative Care Programs, and provides a number of useful resources for families and caregivers.
The Center to Advance Palliative Care (CAPC) provides essential tools, training, technical assistance, and connection for all clinicians caring for people with serious illness. They have published guidance on designing a pediatric palliative care program. View the CAPC guidance.
Courageous Parents Network - CPN is a destination created by parents, for parents, to support, guide and strengthen families as they care for a seriously ill child. Here you will find wisdom from fellow parents and pediatric care providers to help you be the best parent you can be to your child and children—and get through each moment
STATE OF MICHIGAN RESOURCES
The Family Center for Children and Youth with Special Health Care Needs (Family Center). This parent-directed
section of the Childrens Special Health Care Services (CSHCS) helps shape CSHCS policies and procedures and help families navigate CSHCS. They also offer health resource information and emotional support to all Michigan
families of children with special needs. 1-800-359-3722, or email firstname.lastname@example.org.
Conference scholarships: Families who live in Michigan can apply for a scholarship to help cover expenses for
one parent (with a child, birth to 26 years old) to attend a conference related to their child’s special need. A youth
(14-26 with special needs) can also apply to attend a conference related to their own diagnosis, condition or
treatment with a parent or on their own.
Children with Special Needs (CSN) Fund provides support for children in Michigan with special health care
needs not available through any other funding source. The fund helps with the purchase of wheelchair vans,
equipment and services that promote optimal health, mobility, and development, enhancing the lives of children
and their families. Children under age 21 who are enrolled in or medically eligible to enroll in CSHCS are eligible
for funding from the CSN Fund. Call the Family Center at 1-800-359-3722, or email email@example.com for more information.
Resources for Chronically Ill Children and their Caregivers
ArchAngels - ARCHANGELS is a national movement at platform that is reframing how caregivers are seen, honored, and supporter using a combination of data and stories.
Here4u, located in Farmington Hills, was established to embrace, educate and empower families of
babies and children with complex medical conditions.
Children's Healing Center - The Center, in Grand Rapids, offers an open environment for siblings and parents, where they can connect and share with others. We forge connections with and between families, breaking down the barriers of isolation that often form when coping with serious illnesses.
The Louie R. Merlo Foundation - "Gifting Life's Little Luxuries to Families with Severely Impaired Children. Created in memory of their son, Louie, who died courageously at 16 years old battling a series of severe physical and cognitive challenges from birth.
The Oldham Project offer fine portraits FREE of charge to any man, women or children in Lansing with any life-threatening illness, so that their memory may be kept alive for generations to come.
NorthStar Reach - Serious Fun Camp. The family camp, started in the spring of 2017, currently hosts approximately 1,000 children and family members annually, free of charge, during their year-round camp programming. Located in Pickney, MI, the camp was established for those kids unable to attend regular summer
camp due to serious medical conditions.
Kids Kicking Cancer in Southfield, offers an evidence-based innovative program that merges modern integrative medicine with traditional martial arts. Kids Kicking Cancer’s Heroes Circle program addresses the overwhelming needs of children with illness.
MoodLifters Program - Mood Lifters is proud to present a mental wellness group supporting parents of children with complex medical needs. We recognize that these parents have limited time to take for themselves. However, past participants have said that this group has been a lifeline. Meetings are held remotely via Zoom so that parents can join from wherever they are. Due to generous sponsorship, this 15-week group is provided at no cost.
The Jenna Kast Believe in Miracles Foundation's mission is to enrich the lives of Michigan children suffering from
life-threatening medical conditions by buying gifts and bringing joy and hope to their lives. Along with their gift,
each child receives a personalized trophy to acknowledge their courageous fight.
The Michigan Elks will assist any special needs child in Michigan who is unable to obtain assistance from other agencies or organizations and whose family’s income will not allow them to give the child the needed treatment.
Olivia Kay Foundation was created to support and assist children (and their families) in the greater Lansing community and beyond who have severe multiple impairments, no matter what disease they may have.
Little Mary's Hospitality House - Little Mary’s Hospitality House offers a free vacation to families with children who are battling life-threatening or serious illnesses. Families who have lost a child through illness and terminal adults are also welcome. Additionally, we have expanded our services to include various group retreats.
Make a Wish America - Giving children with critical illness the gift of a life-changing gift today.
Coalition Against Pediatric Pain - an organization dedicated to supporting and uniting families affected by pediatric
pain. Also provides links to other organizations whose goal is spread joy and happiness to chronically ill kids.
UnitedHealthcare Children’s Foundation's Our mission is to improve children’s lives and help families gain access to the care they need through medical grants.
Stepping Stones for Stella provides Buggies to children with disabilities to ensure they experience the great outdoors to its fullest. The sturdy, light-weight, all-terrain Buggies allow easy access to all types of outdoor environments that may require moving across sand, gravel, dirt, grass and even snow. Components are made of PVC pipe material, rubber and stainless steel and are equipped with WheelEEZ® Balloon Wheels.
Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Through videos, podcasts, printable guides, Guided Pathways, and blog—you will find wisdom from families and pediatric care providers to help you get through each moment. And be the best parent you can be.
The Charlie Waller Legacy Fund provides financial assistance to families facing financial difficulties as a result of having a child with a life-limiting condition or who have had a child die of any cause.
Grievewell provides resources and support to adults in grief, as well as those who surround them, in order to build a community that promotes healthy grieving and healing. They envision a community in which individuals grieve well
The Compassionate Friends assists families toward the positive resolution of grief following the death of a child of any age and provides information to help others be supportive.
Bereaved Parents of the USA is a national site for grieving parents, grandparents, and siblings. A chapter is located in Saginaw.
Ele's Place is a healing center for grieving children and teens, located in Lansing.
Past and Current Newsletters
In the News
Nurse Practitioner Deborah Fisher, who specializes in palliative care at Children’s National Hospital in Washington, D.C., shares her Brief But Spectacular take on an important subject that’s difficult to discuss in this PBS segment.
Dr. Nadia Tremonti, Coalition Board Member, shares her work to make end of life better for families dealing with terminally ill children in this award winning documentary.
Whether wishing for a cure, a return to normalcy, or mitigation of suffering, parents unanimously emphasized the ever-presence of hope as indispensable, not despite (or in opposition to) their realism but, rather, because of their prognostic awareness." This vital interplay of emotions is explored in the current issue of PEDIATRICS article.
Actress Melissa Gilbert has served as the President of the Board of Directors of Children’s Hospice and Palliative Care Coalition (CHPCC) since 20 and was the keynote speaker at this year’s 11th Annual Tidewell Hospice Luncheon. As a children's hospice advocate, Melissa decided to “dedicate my life to ensuring that all chronically and terminally ill children get to live and die with gentleness, dignity and the grace that they deserve.” Learn more about her work in this interview at this link
Children at any stage of any serious illness, whether they’re receiving curative treatment or not, can benefit from the expertise of pediatric palliative and hospice care specialist. Learn more about how a family benefited from the care they and their child received from the pediatric palliative care team.
Caring for a seriously ill child can take its toll on parents and their relationship. Cultural upbringing can influence how spouses communicate and share these feelings. A study by NTU Singapore reveals a new approach for Asian parents to communicate their feelings and interpersonal exchanges.
Parents, particularly mothers, caring for seriously children are often the only consistent advocate for the child. ”A recent study found that children with medical complexities are cared for by an average of 13 outpatient physicians and six subspecialists. Therefore, managing a child’s treatment and maintaining her or his quality of life is often challenging and costly for parents
Clear understandable communications between clinicians and parents or patients can be the “best tool, especially in the care of critically ill patients”, according to Dr. Barbara Sourkes, director of the Pediatric Palliative Care Program at Packard Children’s. Learn more about the challenges of these conversations and ways to improve them in this newly published article.
The lack of access to nursing care and home visits can be especially difficult for families caring for seriously ill children as highlighted in this article.
There is no time limit for dealing with grief, especially for the loss of a child. Michael Cruz Kayne, a New York comedian, decided to share his feelings on social media on the 10-year anniversary of his infant son’s death. Sharing his thoughts and feelings touched thousands, many of whom were compelled to share their stories.
The results of a small study recently published in the British Medical Journal (BMJ) Supportive & Palliative Care concluded that oftentimes, “doctors tell parents too late that their child is near death,” and that quality palliative care depends on “open, accurate, and timely information about terminal illness and associated life expectancy." Read more about this study and its findings