Talking to kids about their health
Do you have any advice for parents on how to talk to their kids about their health?
I certainly try to advocate for openness wherever possible, and it depends a lot on the age of the child. With a young, young child, there’s certainly not much sense at all in getting them worried or talking a lot about catastrophic outcomes or things like that. When the child is young enough to understand but not young enough to sort of emotionally process, I’ll often meet with one parent only and the other one is with the child outside or we’ll have the child playing outside with one of the quality of life people or something like that. As they get older, toward the preteen years and certainly teenagers, I personally really want them to know what’s going on and I try hard to have open discussions with the families and the kids in the room. Most families want that. I have had a few patients where the parents do not want their kids to know or understand what’s going on even into their teenage years, and I’ve had some cases where I’ve been uncomfortable about that. But that’s rare. In most cases, I find, the parents want to talk to their kids about it.
Darren Orbach, MD, PhD
I believe that parents should talk to their children about their health. It’s important to have an honest conversation with children from an early age with language that fits into your family and also is not too scary for children. Naming, owning, and talking about whatever the vascular anomaly is and not hiding it often helps the child accept it. Children receive a clear message from their families that it’s something that’s ok to talk about. If parents don’t talk about the fact that a child’s has one cheek that is bigger than the other or is a different color, then the child can interpret that as it’s not okay to talk about it since nobody ever talks about it. I know one family who calls the child’s leg a “mermaid leg.” That little girl is growing up proud that she has a “mermaid leg.” I think that’s a very good place to start from a very early age, and encouraging kids to talk about however, whatever they’re feeling.
[Later]
Something I feel very strongly about is not hiding anything and not lying about what a diagnosis means or what it is because kids will eventually learn. If they hear a diagnosis and then parents don’t tell them what the diagnosis means, they’ll use their imagination or might get on the internet. Then there’s a scenario with a kid who can potentially be really upset and not trust either a parent or the care providers because they didn’t… get accurate information. Any information needs to be tempered by age and development, but I think hiding or not telling kids about a diagnosis is potentially dangerous.
Brooke Corder, MSW, LCSW
Individual patients get customized advice here based on age, maturity, support, level of understanding and what they actually want to know. Without information, children will assume far worse than the truth. For hard conversations, it’s best to talk first with the parents and not the child, set expectation and help parents process their own reactions before talking to their kids. Children pick up emotions in the room quickly and that can distract from the message you’re trying to convey.
Cameron Trenor, MD
First of all, I think that parents should not fear talking with their child about any deformity. , They shouldn’t emphasize “specialness” but rather be serious and factual. “You have a nevus. This is a collection of blood vessels, it’s going to get better.” When the child gets older you become more precise. “You will have to have surgery to get rid of it, it won’t be as noticeable.” Be factual. If a parent is very, very anxious or the team sees that the parents are anxious, somebody should be with the parent to help give the explanation and help the parent to not be so anxious… If there’s a divergent opinion between the mother and father, it should be resolved outside the sight of the child. Don’t give two messages, one from one parent that is very negative and one from the other saying, “No problem, don’t worry about it.” It’s very confusing for the child, so somebody needs to help the parents reconcile their view of what is happening, and parents have an obligation to do that among themselves before they talk with the child. Talk with the child more than once. One-shot discussions with children just don’t work, it has to be a process, a discussion over time and over developmental phases. If it begins early, let’s say at four or five, for a discussion about, “Oh, I have this deformity, what’s it about?” Well, you have to repeat the discussion at age eight and nine and ten. On the other hand, you don’t look every day in the mirror and say, “Is it getting better today?” because then it just focuses the attention on it.
Myron L. Belfer, MD
I’m not a psychiatrist, but from experience with lots of families facing these physical challenges, I think it’s crucial for the parents to make it clear to their kids that not only that they love them, which all parents do, but that they can deal with the situation. If the parents act like their life is devastated by what their child has, then the child feels inferior. I’ve seen parents that are just amazingly supportive; before the children are born they’ve just accepted, “This is what’s in front of us and we’re going to deal with it, and we’re going to make the best opportunity for our kid.” Then as I watch those kids grow over the years, most of those kids are incredibly resilient and have great lives. When parents are devastated by a physical feature or a health issue they weren’t expecting in their child and they let it control their lives or they get angry at the world for doing this to their child or to them, then the kids sometimes grow up resenting the world, feeling that they’re a victim, and not making the best of their opportunities. There is a lot of self-pity, and often looking for pity from others, and those people don’t seem to be as happy or as accomplished in their development or in their lives as those that have the families that really take it as a challenge and opportunity. Not to say that they would want it to happen to the next kid, but I certainly know of patients who are so motivating that I wish I or my kids could be as upbeat and as positive and as big of a contributor to our society as some of these patients who have sometimes grotesque physical challenges, sometimes amputees, stomas, all sorts of what others would consider horrific physical challenges, and you look at these kids and they’re just… leaders.
Steven Fishman, MD
How should you discuss the children’s future?
Give them realistic expectations, “You know, it’s going to be really hard for you to play soccer, but we’re really going to work so that you’re able to walk or use this limb in some functional way,” and often that’s what the child is more concerned about. The person with a major problem is more likely to be concerned with preserving function. If they’re concerned with both appearance and function, then it compounds the problem because the surgeries themselves carry with them a certain amount of disfigurement and pain. So you have to be supportive, but it’s always good to be realistic. A certain amount of denial is healthy. If a child comes and says, “I’m feeling great,” don’t take that away, don’t say, “Oh, I would’ve expected you to feel terrible.” That’s a mistake. But when a child says, “I’m going to be a football player, I’m going to be Tom Brady,” with or without a malformation, the chances of your being Tom Brady are not likely, so you want to put that in some context for the child.
Myron L. Belfer, MD
Talking to adolescents
What advice do you give to older children?
Adolescence is a difficult time; with or without a vascular anomaly. Ideally, parents have given their child language and knowledge while growing up. If that’s the case, then it’s already kind of embedded in that they know that their leg looks different, and that doesn’t make them more or less of a person than someone who’s leg doesn’t look different. If that’s been done all along, then it’s just a reminder or a re-coaching that everybody’s different, we all have things that we’re good at, things that we’re not so good at, and then trying to focus more on the things that are positive and successful. The children that don’t have that built in to their core system yet, it’s harder. Those are kids that might have trouble even without a vascular anomaly, I think. I think in general with the teenagers, what’s helpful is finding peers that are supportive, helpful, kind, understanding. It’s important to have a peer that you can talk to, that you can show the vascular anomaly, to show the leg so not everything is secret, having some friends that know you well, for lack of a better word. But adolescence is hard.
Brooke Corder, MSW, LCSW
When kids should become more involved with their healthcare
At what age do you include the patient in the discussion of their care and in making medical decisions?
It follows a general rule of thumb throughout pediatrics; the older you are the more involved you are in your care, and we try to be very candid with families about this topic. There are decisions that need to be made in infancy or toddlerhood that a parent has to make on behalf of a child. We counsel whether it’s ok to wait until their children are older and have their own opinions or whether there are advantages to treating earlier. Usually if we’re having that conversation it’s because there are advantages to treating earlier.
However, somewhere in school age, it’s really important to have the kids “buy in.” We’re, by and large, dealing with patients who come to us because of a significant concern. At the milder end of the spectrum it may be a cosmetic concern and others have pain recurrently in one site or some other problem, so the kids themselves are pretty motivated to improve something. With those, we’re trying to guide a good conversation about how much better; we’re setting expectations. If you have a severely affected leg compared to a “normal” leg, it’s important to understand that better doesn’t mean the same as the other leg. So once you’re into school age they’re an active part of the conversation. For patients 18 and older, they make their own decisions. Although, they often have their parents with them, because it’s rare and still intimidating for a 22 year old to sit with a lot of doctors and make big medical decisions.
Cameron Trenor, MD
MBS: I think that kids of almost any age can start to be involved in understanding what they have, what to call it, and how to explain it to someone else. I think that’s important, but, in terms of making decisions about treatment, we try to involve the child in care planning from the beginning. I’ve seen Dr. Fishman talk to a family about an upcoming surgery while getting consent and being sure that the 12 or 13 year old patient is also understanding and signing the consent form along with the parents. This is beneficial for the child to feel that they are being heard about what is being planned for their body. We rely on the parents to help us to know at what level to include the child and how upset they might get. Some kids are certainly very anxious about hearing about procedures. We have to rely on the family to give us clues about whether or not to include the child and at what depth.
ES: I agree that is depends on the parent comfort level and the patient’s level of maturity at the younger ages. We do see patients that begin to self-advocate earlier seem to be really engaged in their treatment plans are teenagers and young adults.
Erin Spera, MS, CPNP and Mary Beth Sylvia, MS, FNP-BC
I think pediatric patients should be involved in their care from the time they have a cognitive understanding of what they have. Some kids do not want to know, but a lot of kids are curious. I also encourage kids to present things in their science fairs or in school. Every year a few kids will present something at their schools and I will provide digital pictures and MRIs for them to use. I think that the more understanding children have about their diagnosis, the better they will be.
Joseph Upton, MD
I don’t think there’s an exact age, that’s really based on the child and the family. No matter what age the child is, when they are saying they would like to participate in the conversation or they are asking for a procedure to address a concern – such as a painful area, a lump that makes pants or shoes hard to wear – I do think that the child should be part of the conversation/decision in a medically appropriate way. With that said, if there is a teenager who does not want to engage in the process/discussion of his/her own medical treatment, I do not believe it is beneficial to just let them not engage and be unaware of what is happening to their body. Of course there are some teenagers that are not mature enough to be very involved either. I think that it has a lot to do with development and maturity and what the parents feel the patient is ready for.
Brooke Corder, MSW, LCSW