What are some things you want Heart Center families to know?
I’m often telling parents there’s a lot they can do or that what they’re already doing is so meaningful. Parents tend to downplay their contribution to the situation while their child is in the hospital, but I want families to know that they bring so much healing and growth to their child while they’re in the hospital by just being here. Especially for the little ones; them knowing their parents are there is extremely important. For the newborns, sometimes that’s hard to really understand, but we know babies are born knowing their parents’ voices and scent, so having those one of two people by the bedside is very important to them. Even though your child is very sick and you’re told you can’t hold them, there are so many things like voice, smell and touch that are so important. We’ve also come up with a lot of ways to achieve this presence when the family can’t be at the bedside like hanging up pictures of the family, having a parent carry a cloth so it smells like them and then leave it with the baby and making voice recordings of the family who can’t be here. I think all these things actually make a big difference. We’ve started working with the fetal team to talk to families about this before they’re even submitted.
I would also want families to know that there are people looking out for their child’s development from the very beginning. That they’re not alone in this process; many of us are working towards these goals.
– Samantha Butler, PhD, developmental psychologist
You can’t over-emphasize the importance of saying no matter what, we are here. We are always here for you and your child and that’s the guarantee. Beyond that, sometimes talking to other families who have had a child in a similar situation helps. We try to give them exposure to other families who have had a range of outcomes, some with great outcomes, some with not so great outcomes, but still giving them a realistic picture of what might be ahead. Some families find that helpful and some prefer to not look that deeply into the future. I can understand both perspectives.
– Andy Powell, MD, pediatric cardiologist and diagnostic imaging
If parents have questions or concerns, they should always bring those up to providers. Even in rounds, parents are invited to rounds and if they have questions, they can ask them right then and there and have them addressed. I’ll tell parents bring a notebook and write them all down for when the doctor comes or if it’s the surgeon who only comes for 5 minutes, you can reference them there. I also tell that to a lot of our teenage patients.
– Kate Huyler, MS, CCLS, child life specialist, 8 South
For children with serious congenital heart disease, I explain that it’s a journey over a lifetime. That we are going to have many decision points to make, and that we’ll make them together. That we will be there for the family and that we will be there at each juncture, that they’ll never have to be alone in making decisions and that we will give them the greatest wisdom that we can, not just for a single physician or surgeon, but from the whole care team here. Often, we balance that with wisdom from other places outside this institution. And if there are other ways to do things, we inform the parent. I believe that we’re partners in this journey.
As the child gets older, I spend a lot of time helping parents getting their child ready for transition. Sometimes parents are nervous to share with their child what the risks are and of course the children worry. There’s no one that knows you better than your own child. So sometimes we have to negotiate how you share information about upcoming procedures with children. How you have children take part when they’re old enough for decision-making, how the children handle their own stress when necessary. Anxiety is prevalent in older children and adults with congenital heart disease, so we try to look around that corner and help individuals handle that anxiety by telling them that’s normal and giving them tools to manage it. As they grow up, let the patients begin to feel like they have some control over the variables, and that they know who to call, how to take their medicines and that they understand their heart disease. That’s the latter part of the journey of pediatric cardiologist; you hand over your patients, who really begin to become like family over time, to adult CHD specialists.
– Jane Newburger, MD, MPH, pediatric cardiologist
I think it’s very important that children understand why we are suggesting procedures and also understand that – even if they are going to require a procedure on their heart – it does not make them an unhealthy person. That doesn’t make them somebody that can’t live their life to the fullest and do everything in life their peers are doing. I think we have learned in the past few decades about the subconscious limitations that people are putting on themselves, even when we as a medical group don’t feel the need for any limitations. We see them and we tell patients or families that their child is fine, that things are fixed that there are no further concerns. Patients sometimes still subconsciously don’t quite liberate themselves to be free to do everything they used to do or to do everything their peers are doing. We have a lot of awareness of this now and myself and some of my colleagues are working on programs to address this.
Now that we have come a long way in repairing cardiac diseases, it’s getting to repair the person as a whole and break them out of some of the less talked about barriers that get established along the way, whether they be physical or mental, from the stress and anxiety of going through these various procedures, tests and visits. We have these periods of time where we actually interact with people face-to-face and then they go home and they live their lives; we don’t see their day to day or their moment to moment, but they can be profoundly affected in ways we hadn’t recognized before.
– Susan Saleeb, MD, pediatric cardiologist