Getting through a child’s heart surgery or cardiac catheterization (cath) is hard enough when the child is little and doesn’t really understand what is happening, but preparing an older child or young adult for a major heart procedure can be difficult for parents and for the older child. Luckily, there are experts—the patients themselves and parents of older children—who shared what helped them get through. Here is what they had to say:
1) Have a support system. Almost without exception, the adults and older teens said the most important thing that helped them get through their surgery or catheterization was their support system. This support system can be parents, siblings, partners, friends, especially friends with congenital heart disease, spiritual leaders, and family members who were there with them, and stayed with them, to help them get through.
Their support system started supporting them well before their surgery or cath and continued well afterwards. Parents were often stated to be the most helpful, particularly during recovery when they had limitations and needed help with routine activities. Connecting with others online really helped many teens and adults too. Just knowing people who have gotten through the same procedure made a difference, particularly helping with fear and anxiety.
2) Know it’s okay to be scared. Most adults said they were very scared each time they went into surgery or even a cath. They were scared of pain, scars, recovery time, being unable to do the things they love doing and even dying, and this is completely normal and expected. One 23-year-old patient who had had five heart surgeries wrote, “I’m not going to lie, every time prior to surgery I was scared to death. The best thing is having a good support system.”
3) Have a plan. Parents of older children recommended having a plan in place for talking to the older child and providing support. If your child’s hospital has a Child Life Specialist or Social Worker, talk to him or her about how to talk to your child and how to best prepare. Some older children will want a lot more detail than others, so be aware of your child’s needs. Parents need to recognize the difference between their needs and the child’s needs and be sensitive to what the child needs.
Child Life Specialists can help prepare for the hospital stay as well and give you a list of things to bring and tell parents what they already have there. One item many adults recommended bringing is pajamas that button or snap up the front so the child can wear his or her own comfortable clothing as soon as possible. Parents suggested in addition to bringing some items to entertain and distract the older child, they should bring a few for themselves. Waiting while a child is in surgery can seem many times longer than it actually is, so parents want to have something to distract them like a movie to watch or games to play.
Make sure your plan includes recovery time. Understand that the child will have limitations on movement, so plan activities that an older child or teen will enjoy during this time. Also, adults with CHD reported that their emotional recovery took as long as, or sometimes longer than, their physical recovery, so plan for a strong support system that includes emotional support after the procedure or surgery. Let them know they may have a lot of emotions that come up afterwards, including anxiety and depression, and give them a safe place to talk them out. For females, understand that their hormones may be affected and learn, in advance, how menstrual cycles and hormones may be impacted.
4) Stay on top of pain. Most parents get very upset when seeing their child in pain. Adult CHD patients tell us there is often pain with the healing process, and sometimes it is severe. They advised staying on top of pain, especially in the beginning. Once the pain cycle starts, it can take longer to stop it. Be sure to follow medical advice on pain management. Having a plan for pain management can keep everyone feeling better.
5) Take care of yourself. Parents of older children and adults with CHD told parents to take good care of themselves and the family before the surgery. This means eating well, staying healthy, exercising and sleeping enough. Healthy habits can help combat the effects of anxiety and stress. Also, when we are healthier, we are better able to care for our children. They also suggested that parents do fun things with the family and have special treats like favorite foods and activities before the procedure.
6) Filter or limit information. While the world wide web is a place of much good information, it can also create unnecessary fear and anxiety. Many adults told us that they were told not to Google open-heart surgeries and watch the videos before surgery, and they were very glad they didn’t. One adult said, “I stayed off of Google. My mom is a registered nurse and told me that googling things like ‘bypass machine’ or “’open-heart videos”’ wasn’t going to be helpful. For once, I’m glad I took her advice!” They also said they were careful about what kinds of information they exposed themselves to. There is a line between enough information to be prepared and too much information causing fear and nervousness. Again, talk to Child Life Specialists and other medical professionals caring for your child for resources for parents and older children and limit everyone to those resources.
7) Talk it out. Older children, teens and young adults often need to talk to others about their fears and feelings. Parents need to become good listeners, and work hard at neither minimalizing nor discounting fears and concerns. It is natural for parents to want to reassure their children and “fix” their problems, but this can make a child feel like he or she can’t talk openly and sometimes they just need to be heard. Of course, often one of the biggest fears (for the child and parents) is that the child will die, and there is no guarantee that this will not happen. A response to this fear might be acknowledging how scary this is, but also giving assurance that you are seeking the best medical care possible for your child.
Also, it is important, if possible, to allow older children to ask questions. They may have questions for the surgeon, interventionalist, nurse, Child Life Specialist or cardiologist. One patient advised “talking with the nurses and surgeons.” He told older children that, “it’s their job to answer any questions. Be open about anything that may be lingering on your mind.” Sometimes, older children will want to ask questions they don’t want their parents to hear (children often don’t want to worry parents more than they are already), so see if there is a time or way for the child to ask those questions and get the answers he or she needs. This will also signal to the child that he or she is an important part of the care team.
Thank you to those willing to share your expertise and experiences on the Mended Little Hearts National Organization Facebook Page.
Texas Children’s Hospital
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*If your hospital has resources on preparing an older child for surgery or a cath, please let us know.