When people hear that I am a clinical social worker supporting patients and families affected by congenital heart disease, I often am responded to with an audible sigh. Many can’t understand why I would willingly be in said roll, considering the depth of grief that I often witness. And not simply grief related to the loss of a child, as there is grief associated with such a large new diagnosis for every family. While this grief looks different for everyone, it is often a journey for families as they let go of the postpartum experience they had planned as they accept their new reality. So many of us when pregnant plan nurseries, newborn pictures, and a picturesque first sibling meet. These dreams look different when a child is admitted to a cardiac ICU following birth.
There is truly something miraculous about children. Their strength and tenacity are absolutely far beyond their adult peers, and it is 100% why I prefer to work with babies and children. The fights that they are up against are often unfathomable, yet their ability to smile throughout is inspiring. Many babies with CHD will be admitted to the hospital for awhile following birth, face surgery within the first weeks-month of life, and all require life long care. These children will have countless outpatient appointments, will be more susceptible to illnesses, and hospital admissions will be normal to them. Heart families will know nurses and doctors with great familiarity, know to always ask for Child Life because they have all of the fun stuff, and most know the cafeteria schedule by heart. Chest tubes, IV’s, medications, hospital beds, and obsessing over weight gain are all too familiar for these families. They are also far too familiar with the medical debt that can accompany these necessary interventions.
CHD is the most common form of birth defect, affecting 1/100 children born. If it hasn’t impacted your family, it likely has impacted the life of one of your friends. Given my role, I am frequently asked how people can best support or advocate for families facing such a life-changing diagnosis. Here are my tips:
Helping Families Affected by Congenital Heart Disease
Be a Health Care Advocate
Healthcare is more than important to children facing heart disease- it is absolutely a necessity. Most children treated for heart disease rely on Medicaid or other public insurance. Threats to Medicaid are direct threats to the lives of these children. These kids have drastically benefited from the Affordable Care Act which removed lifetime insurance caps (which some kids used to meet before their first birthday). The ACA also prevents insurers from denying coverage for pre-existing conditions. This allows families to confidently know that their children will never be denied coverage because of their heart disease- which I promise brings them a sigh of relief.
Food- All the Food
Just as many people offer meals when a family welcomes a new baby, please offer even if that new baby is still at the hospital! Many hospitals even have gift cards that can be purchased for families that they can use for meals while at the hospital with their child. Help stock up their freezer for when that baby comes home, too, as they will be quite busy adjusting to life at home.
Offer a Congratulations!
So many families I meet have told me that I was the first person to congratulate them on their newborn. In the chaos of transferring hospitals, getting situated in an ICU, and paying attention to the medical needs- a simple congratulations is often forgotten. I have also had families share that they hear “I am so sorry” from their friends and family before hearing “Congratulations! You have a new baby!”. While there is certainly grief and emotion surrounding the diagnosis, acknowledging a new baby is important.
Sibling Support Matters
When this isn’t the couples first baby, they are often very concerned about how the sibling is coping. It can be quite a gift to have friends and family keep the older sibs entertained, loved on, and well fed while parents are focusing on the needs of the new baby. This is also important once the new baby comes home, as parents will have multiple follow up appointments for baby. Having someone to look after the older siblings on those long appointment days can be a true blessing.
Listen More than you Talk
As in most emotional situations, sometimes our instinct is to talk more than to listen. Be intentional about providing space for your friend or family member to share how their baby is doing, or to share their own thoughts and feelings. While hospital staff works hard to be supportive for families, there is something truly valuable in friends and family being fantastic supports, as well. This will look different for everyone, as some families like to keep the day to day details private. Respecting how the family best copes and uses their supports is the utmost priority.
Be Willing to Learn
Having heart disease is often accompanied by additional layers of needs. Some kiddos need feeding tubes, developmental therapy support, or are seen by additional medical specialists. Familiarizing yourself with the frequent needs of heart kids can help families feel like you have a vested interest in their family. It could also help you support the family to give the parents a break every once in awhile!
When I think about my role, I can’t help but be filled with intense gratitude. Families invite me into some of their hardest, and some of their happiest days. In my role, I have seen multiple families experience the roller-coaster ride that accompanies congenital heart disease, and each family continues to teach me along the way!