Supporting Heart Siblings at Home – Part 2

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 the final part of this blog series, Nicole Johnson, a Child Life Specialist, offers tips on how to stay connected with your children at home and prepare them for hospital visits.

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. 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 makeups, 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 the 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?

Connection Activities 

Staying connected with the children at home is so important in supporting them through their sibling’s hospitalization. That means being connected with their hospitalized sibling but also their caregivers who might often be away at the hospital. Many times, siblings are missing their parents the most and are more upset by that separation.

Technology

Of course, video chatting, texting, and calling are great options. But thinking outside of the box, are there games your kids at home can play with you or their hospitalized sibling virtually? Words with Friends, online chess, or even having the same board game (one at home and one at the hospital) like Battleship or Guess Who to play together over video chat are creative ways you can keep in touch. You could even check with the hospital to see if it’s possible to bring in a game console from home so your kids can play video games with each other virtually.

One on One Time

Find a way to have dedicated time with each of your children. It doesn’t have to be over the top to show them that you’re still there and you still love them. It can be just 10 minutes a day of you and them, doing something together. Try reading books, coloring, building with blocks, playing a game, or talking. Even if you are staying at the hospital the whole day, try to find 10 minutes to connect one on one with them.

Send Letters or Drawings Back and Forth

You can set up a “mailbox” at home and the hospital, and carry letters or drawings back and forth between siblings or between your kids at home and their caregivers who are at the hospital.

Matching Comfort Items

Get matching comfort items, like stuffed animals or cozy blankets – one for each child at home and one for your hospitalized child and/or the caregiver. You can tell your kids that whenever you all are missing each other, give the stuffed animal a big squeeze and know your loved one is squeezing you back.

Books

Books can be a good way to introduce the idea that we’re connected by our love even if we’re far apart. A couple of good examples are The Invisible String by Patrice Karst and The Kissing Hand by Audrey Penn. In keeping on theme with The Invisible String, kids can cut out hearts and string them together with clear string. Have them write something on each heart that they miss about their sibling/caregiver. Share a happy memory, an inside joke, a quote they love, etc. Then hang the strand up in the hospital room.

Hospital Visitation

Check with your hospital to see what their visitation policy for siblings is. It’s important to keep your kids as connected as possible. Allowing them to visit however much is appropriate while ensuring that your children at home actually want to come in and visit, can facilitate this. Some may find it too overwhelming to visit the hospital, and that’s okay too. A child life specialist can meet with siblings to prepare them. Before the visit, they can explain what the hospital room looks like, including the medical equipment they’ll see. Your children may need to be prepared for what their sibling looks like or changes in how their sibling feels. A child life specialist can also provide developmentally appropriate explanations for everything, and make sure they feel comfortable in the room.

Having a Role

Having a role for a child can accomplish multiple things. It can help your children at home feel like they have some control in a situation that feels very out of control. It can give them a tangible thing that shows they are still important in the family dynamic. This can help with connection activities as well. Their role should be something deemed helpful to the hospitalization experience and simple to accomplish. Ideas include picking photos to print to hang up in the hospital room or making cards or drawings to decorate the room. They can record themselves reading a story or singing a song to their sibling. Children can help put together a care package for the sibling or the caregiver. They may want to make a sign for the hospital staff to get to know their sibling including their likes, dislikes, or nicknames.

Routine

As much as possible, try to stick to the same routine at home. Even if that means someone else is spending most of the time with your kids. Try to get them to stick to your general schedule. Routines likely can’t be exactly the same, and that’s okay. Prepare your children for who will be taking care of them. This way they always know they will be cared for and what the new routine will look like. Share your plan for staying connected with them. It’s also important to let your children’s teachers and counselors know what is going on with your family situation, so they can respond with extra support. 

As you navigate the complicated ins and outs of supporting each of your children where they’re at, my biggest piece of advice is this: at the end of the day, do whatever feels the most right for your own family. Find the things in the suggestions above that work for you all – not all of them will, and it’s not an all-or-nothing strategy. 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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