Learning that your child has congenital hyperinsulinism (HI) can feel overwhelming. At the same time that you are welcoming a new baby into your family, you’re also learning about a rare diagnosis that comes with uncertainty and new responsibilities. It is natural and expected to feel a mix of emotions.
Caring for Yourself and Your Family
Everyone in your family will adjust in their own way and in their own time. You may experience reactions of grief, shock, denial, despair, anger, or sadness. These emotions are all part of adjusting to something unexpected. They may come and go or show up in ways you did not anticipate.
There is not one way to process new and difficult information, especially, on top of caring for a child with many complex needs. For some, relying on a support network of loved ones, a partner, family, or friends, can help get through these challenging times. CHI also has an extended virtual community of people to share with you, who are members of the Facebook Forum. This virtual community has over 2,600 members from over 80 countries, all united through their shared experience of having a family member with HI or being an adult with HI. This is a wonderful resource, a place to ask questions and share your concerns and successes.
If you would like to connect with a parent to someone with HI or an adult with HI, you can visit the CHI mentors webpage to find short biographies and email information. Please also let us know if you would like to be in phone conversation with an experienced parent of a child with HI. You can make that request here.
Supporting Siblings
Siblings of children with HI go through their own process of adjustment. Their routines will likely be disrupted, and they may see their parents giving extra time and attention to their brother or sister. This can lead to feelings of confusion, worry, or jealousy, especially if they don’t understand what is happening.
To help with this, Chloe Koeppen created a beautiful children’s book to describe the experience of having a sibling with HI. Her book, Rare but Just Right- My Sweet Sibling and I, is available for purchase, and 25% of the proceeds are donated to CHI.
CHI has also developed kid-friendly materials, such as coloring books and videos, to help better introduce and understand HI.
Know that you are not alone
Over the years, we have been in touch with hundreds of families who have experienced life with HI. Every experience is unique, but they often share hopes, fears, and moments of strength many of us can relate to. We encourage you to listen to some of these experiences through our collection of HI-Stories. These are real stories from families like yours told in their own words. You can also listen to the story told by Julie Raskin, CEO of Congenital Hyperinsulinism International, on The Story Collider podcast of her personal experience as a parent navigating an HI diagnosis. These stories remind us of the supportive community here, and we are here with you through your experience with HI.
