Supporting Heart Siblings at Home – Part One

It may be difficult to balance the needs of your child with CHD and those of your heart healthy child. Siblings at home may feel left out or confused, and we may not always know how to best support them. In this two-part blog series, Nicole Johnson, a Child Life Specialist, offers insight into how we can help heart siblings cope and include them in this major life event.

There’s no easy way to be in the hospital with your heart warrior, and there’s no easy way to manage having children at home who need you too. Maybe you’re experiencing this with a new baby who will require heart surgery days after being born. Siblings at home may have been eagerly awaiting baby’s arrival for months. Or maybe your heart warrior is older. It’s a different kind of hurt because your children have been growing together, and now they’re really missing each other. You might be struggling with how to split your time between your child in the hospital and other children at home. Or how to explain appropriately what’s going on, or how to keep all of your children connected. You may be feeling like you wish you could be everywhere at once. You want to do the best thing for everyone. Yet you’re pulled in so many directions, you feel like you’re not doing well at any particular one. Sigh… Parent guilt truly knows no bounds.

In my work as a Certified Child Life Specialist in the Pediatric Cardiac Intensive Care Unit, I see families of all make ups, backgrounds, and levels of social support work to balance having a child in the hospital and their other children at home. We know that having a child with congenital heart disease doesn’t just affect the child or even just the caregivers but the siblings too. The entire family unit goes through this together. Knowing that much of parents’ presence and attention will be dedicated to the hospitalized child, how can we support the siblings and make sure they still get what they need too?

Providing Explanations

Children are so very perceptive! They pick up on so many nonverbal communication pieces that we don’t even realize we’re engaging in. They overhear something when we think we’re speaking in code, giving grandma an update over the phone. Often when children are left to their own imaginations, the ideas they come up with in their heads are worse than what’s really happening. For example, if we don’t feel ready to say the truth and instead say, “Baby sister has a cold, so she needs to be at the hospital,” the other sibling might worry that the next time they get a cold or their parent gets a cold, they’ll have to go to the hospital and be separated too. Or they might worry, “I didn’t wash my hands one time. Did I give the baby a cold? Is it my fault baby sister is in the hospital?” That’s why it’s important to provide honest, simple explanations and to prepare your child to the best of your ability.

If you don’t know where to start, ask your child life specialist! We’re trained in providing developmentally appropriate education and preparation to children of all ages. The most basic explanation I generally give is, “Sister’s heart is sick, and she needs the help of doctors and nurses at the hospital to get better.” I might follow that up with, “No one knows why sister’s heart is sick, but no one did anything to make her heart sick. It’s no one’s fault, and just because sister’s heart is sick doesn’t mean our hearts will be sick too.”

Welcoming All Feelings

It’s so important that our children know however they feel is okay! They might have all kinds of feelings, and they might feel them all at the same time, which can be very overwhelming. We adults are experiencing that too. When we think about all the complicated feelings we’re holding, it can remind us to meet our children with grace. Your children might feel happy, sad, mad, jealous, confused, worried, frustrated, lonely, guilty, excited, and anything else. Help your child be able to label their feelings so it doesn’t seem so overwhelming. If your child is young and still learning what feelings mean, there are a lot of great feelings books across various ages. Encourage your child to express those feelings be it through talking about them with a trusted loved one, making art, making music, playing, reading books about other kids who have felt the same way, etc.

When your child does express their emotions to you, be sure to validate them. You don’t need to “fix” anything because there is nothing wrong or bad about feelings themselves. You just need to show your child they are loved, they can trust you with their feelings, and that it’s okay to cry. That may look something like, “I hear you telling me you’re feeling worried and confused right now. Sometimes I’m feeling worried and confused too. It’s okay to feel like that. We’ll get through it together. I’m right here with you.” While you might want to put on a “brave” face for your children, you help them more by modeling feelings for them. It’s okay to tell them you feel happy, mad, sad, or worried too.

Common Reactions

Children aren’t as able to connect their feelings to words, so they might show us how they’re feeling through their behavior. Some children may become more clingy, act out, have changes in eating and/or sleeping patterns, become withdrawn, or regress in milestones or behaviors like having potty accidents, thumb sucking, etc. Continue meeting your children with grace and love, utilize the above strategies, and you all will move through this together. If these behaviors are more heightened or last longer than you feel comfortable with, contact their healthcare provider or a therapist for additional support.

As you navigate the complicated ins and outs of supporting each of your children, my biggest piece of advice is this: at the end of the day, do whatever feels the most right for your own family. Know that you are doing your very best and let that parent guilt go whenever you can. 

About the Author

Nicole Johnson, CCLS, CTRP, CIMI is a Certified Child Life Specialist working across all pediatric cardiac services at Inova L.J. Murphy Children’s Hospital, including the Pediatric Cardiac Intensive Care Unit, Cardiovascular Operating Room, Cardiac Catheterization Lab, and Electrophysiology Lab. Nicole has specialized certifications and education as a Certified Trauma and Resilience Practitioner, Child and Adolescent Trauma Professional, Certified Infant Massage Instructor, and is certified in Mental Health First Aid for Youth and Adults. She received her bachelor’s and master’s education at the University of Florida. She completed her clinical child life training at Children’s National Medical Center and Cohen Children’s Medical Center.

Her career interests include trauma-informed care, attachment and bonding work, legacy work, and healthcare equity. She has presented at local and national conferences, has been published in the Association of Child Life Professionals Bulletin, and serves on multiple committees and boards. Nicole is dedicated to the education of the next generation of child life specialists and serves as the co-coordinator of her hospital’s child life practicum program. Nicole lives in Washington D.C. with her husband and daughter and enjoys having the Nation’s Capital as their backyard to explore!

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