How should families talk to a child about their heart condition and upcoming procedures and appointments?
For little babies, there’s no way to prepare the child. But for parents, we reassure them that we are with them, that they can always be with their child and that anything we know, we share with them. We are there for them. Having that comfort of someone at your side is really important. We also explain every aspect. In general, the more information that a parent can have — to the extent that they can handle it — the better equipped they are in the postoperative period to understand when something’s expected.
For preparing children who understand language, like 3-5 year olds, they’re concerned about very concrete things. Where will their parents be? If it hurts, will we make it feel better? How long will they be in the hospital? Is there a playroom? At that age, they do not think about mortality.
The older children can become more anxious about something happening to them. And sometimes they can’t even put those thoughts into words. The primary cardiologist has a very big role here in reassuring them. If a child old enough to understand, 8, 9 10, a teenager — I explain that they may have some discomfort, that we are going to give them medicines, that they may feel not so good for three days after surgery, but that they will ultimately feel better. And I tell parents to plan something fun for when the surgery is done. Keep your focus on all the good things you can do when you’re through this procedure. Try to plan activities, like reading and movies, during the hospitalization to take the child’s mind off the discomfort. Because pain is much less if you’re thinking about something else.
For the older child, I talk very explicitly about the fine line between controlling pain and having symptoms from the pain medicines. We explain that we don’t want them to be in a lot of pain, we have medicines that completely control the pain, but those medicines can make you feel constipated, nauseated and very sleepy so that you don’t take deep enough breaths. That you basically recover better when you walk the fine line of not being in a lot pain, but you also don’t have the symptoms from the pain medicines.
– Jane Newburger, MD, MPH, pediatric cardiologist
I get a lot of phone calls pre-cath and pre-surgery from parents about how to prepare the child for what’s coming. We have really good system of communication in place. A lot of what I do is give parents the right language to use and sometimes they’ve never thought of it that way. Sometimes parents feel relief after we talk on the phone because it’s not as scary as they thought it would be. We always encourage parents to call us, even when they get home. It’s the stages of development that we really focus on, and trust is so important. You want your kids to trust you, so be honest with your kids.
– Maureen Abramson, MS, CCLS, child life specialist on 6 East, Cardiology pre-op, and Cardiology general clinic
Something I tell all parents is to be honest with their kids and not tell any lies. But to use developmentally-appropriate language; depending on age, this determines how much detail is given. Parents know their kids best, so they know how much to share.
– Kate Huyler, MS, CCLS, child life specialist, 8 South
As adults, these may be things we think are scary and we may make pre-judgments about the things we’re worried about. But with many children, and especially if it’s a child’s first experience in the hospital, we have the opportunity to shape that experience, and that’s why it’s important to give them information that helps them trust us when we tell them things about how it’s going to be.
– Lauren Smizer, BS, CCLS, child life specialist, 8 East
When you come into the hospital, it’s helpful for many children to go through what to expect ahead of time. We’ve done this with a description, through story books or we’ve had patients come in the day before their test to come in and look at the MRI scanner and see what it’s about. They can use that to help decide if it’s something they want to be awake for or if it’s something they want to be asleep for, with sedation. About 15-20% of our tests are done under sedation or with anesthesia. That’s primarily with children under the ages of 5 or 6. Once they get a bit older, we can often do it without sedation or anesthesia.
– Andy Powell, MD, pediatric cardiologist and cardiac imaging