RECEIVED A CHD DIAGNOSIS?
A Note From Ellen Boyer.
Here are just a few of the priceless resources I wish I had taken advantage of upon Brett’s diagnosis and throughout her life and time in the hospital. I can’t explain why I was so resistant to accepting help or community while I was waiting for her surgery. I can only tell you that I wish I had leaned into them. In different online/social media heart parents groups, you will find a massive community ready to build you up, support you, and give you another opinion of when they would get a second opinion, when they would contact their care team, what therapies they are lining up for their children, all the things. Having access to other parents who have been there before is truly a precious resource in addition to your cardiac care team. There are usually heart parents pages specific to your hospital and area and ones that are more general. If you need suggestions for ones in your area, please reach out to us.
The cardiac social workers and child life team are some of the most unsung heroes in the CHD world. I hope you will connect with them early in your journey, get to know them, and learn how much they want to help lighten your load.
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CHD RESOURCES
Hospital Social Workers.
When a child is diagnosed with CHD, it can take an emotional and psychological toll on the whole family. Hospital social work teams play a crucial role in supporting families during these difficult times. Social workers are there not only to provide emotional support but also to help families navigate the complex medical, financial, and logistical challenges that arise during hospitalization and between appointments. They offer a safe space for parents to express their fears and anxieties, providing a listening ear when it feels like the world is closing in. Beyond just offering comfort, social workers help families understand the medical procedures and treatment plans, often acting as a bridge between the medical team and the family to ensure everyone is on the same page.
In addition to emotional and informational support, hospital social work teams are instrumental in connecting families to resources that can help alleviate some of the stress associated with hospitalization. Whether it's securing financial assistance for medical expenses, helping with lodging and transportation, or connecting families with local or national CHD support groups, social workers play a key role in reducing the burden. They also provide guidance on how to cope with the long-term effects of having a child with a chronic condition, including mental health support for parents and siblings. In the face of uncertainty, hospital social workers are a steady presence, helping families focus on what matters most—caring for their child—while ensuring they have the support they need to cope with the broader challenges of life with CHD.
CHD RESOURCES
Community Resources.
Families are often overwhelmed and in need of community support after receiving the news of a CHD diagnosis. There are community resources available across the country as well as online resources and support groups. Upon searching Facebook and Instagram, you may find a group in your area that can provide things such as emotional support, experience, guidance and friendship. We urge you to explore these things as a possible resource for your family when the time is right.