What should families know when it comes to worrying about the “unknowns” of their child’s heart condition?
I tell my families, no matter what is going to pop up, there will be a solution and a way to pass it, a way to find the next best step. Nothing is predictable. Complications arise, be they big or small. The smallest of issues can really throw families for a loop and that is very reasonable. But how to then get to that next level and step back and regroup and not lose the hope or the momentum of healing is very important. We can’t guarantee a completely benign course. Things come up but you learn from them; you learn how to manage them, and they make you stronger. Having the flexibility to know and accept the fact that not everything is in our control is important.
Oftentimes, there is a lot of perception that there is something very seriously wrong with a child when there really isn’t. Or those who do have more significant disease may come for discussions about timings of procedures, types of procedures. I try to always tell families that these meetings we are having tend to be the absolute worst of the experience. And that when they are actually going to go through whatever is about to happen with their child, it is not nearly as bad as this anticipatory anxiety that they have around what may happen. The anticipation is often much worse than the reality. I can’t take away all the stress of an upcoming procedure, but families seem more relaxed and better able to handle it if I give them the time and pull out all of their concerns in advance.
– Susan Saleeb, MD, pediatric cardiologist
Some parents say they’re too nervous to try some of the things that have been recommended like holding the baby in the ICU or holding the baby in a certain way. Things you may have normally done, like putting the baby on their belly, can become very anxiety-provoking tasks. We try to normalize their concerns and fears but also push. I’ll say, “A lot of parents have a hard time picking their child up when they’re like this, but it’s really important to try,” or “A lot of babies have a hard time with tummy time after heart surgery, but once they get it, they’ll be very proud of themselves for being able to move on their own; this is the first step.” We work on trying to get parents to see these things in a larger developmental picture and understand that they can make a big difference in where their child goes in term of development. Learning how to recognize their own anxieties, which may be providing an additional challenge for the child, is important.
When families are inpatient, development isn’t always the top concern. It’s survival and they just want to get home and make it through and they call back later and that’s fine. Whatever you need to do get through. We give them all the information they might need for later.
The knowledge that you can contribute to your child’s outcomes can change the situation. So recognizing worries that parents may have, like letting their child cry or letting their child sleep on their own, just knowing that they’re adding to the situation can be helpful. Many of our families are supported by social work while inpatient for their own coping.
We know it’s stressful to be a parent in the hospital, and it doesn’t just go away when you go home. Many parents experience stress, anxiety and depression after they go home and need a lot of support. Allowing yourself to get that support and knowing that the healthier you are as a parent, the better you can parent, is key. Most pediatricians have social workers or recommendations on how to support the parents themselves, which is something that could be helpful to all families that go through this. So the child gets the medical recommendations and developmental support they need, and the family can get any emotional or coping help that they need. Sometimes it’s not recognized for months down the road, but we have the ability to help families before they even leave.
– Samantha Butler, PhD, developmental psychologist