Preparations

Two and a half more weeks to go. Eighteen days. While everything is light, breezy and blooming outside, anxiety comes to sit on our chests. I feel it around my heart.

I've read that children who are prepared for surgery recover more quickly and suffer fewer emotional problems afterwards. Those who go in unprepared can feel helpless and betrayed by the people they trust to protect them. The way the parents behave can also promote or undermine the child's coping mechanisms. Engaging in humorous, unrelated conversations can be helpful, whereas anxiety or excessive verbal reassurances can be just the opposite. How and when to prepare a child for surgery depends on age, personality and prior experience with hospitals. Thus far, Kai has been an exemplary patient. He has the utmost respect for doctors and is accommodating in ways unseen at home. We'll see if that lasts. In terms of personality, he tends to be fairly adaptable and easy-going.

How to prepare a preschool-aged child for surgery? The literature first describes some of the general developmental characteristics of this age group: their cognitive development is characterized by egocentric and concrete thinking, they think in absolutes (good/bad) and may view surgery as a punishment for something they did wrong, they fear separation from parents, they cannot conceptualize internal body parts, their coping strategies and concept of time are limited, fantasies tend to dominate, they cannot think logically and learn through the senses, they are very concerned with body integrity and fear mutilation/pain (who isn't?!), their attention can still be refocused from scary to comforting things.

So, when talking to Kai about his upcoming surgery, we should keep the explanation short, simple and reassuring. Something like "We will be going to the hospital and staying a few days. The doctor will do an operation to help your heart work better. The doctor will make you go to sleep before the operation so you won't feel anything. When you wake up, we will be right there. When your heart is fixed, you will be able to run faster without getting tired and your legs won't hurt so much anymore."

Pictures are particularly helpful, so we'll introduce the idea of surgery with the help of familiar characters who all happen to be going to the hospital, too: Clifford, Big Bird, Curious George and Franklin. Medical play, such as measuring a stuffed animal's temperature, is also recommended. In the hospital, the nurses can simultaneously do a procedure on Kai and his beloved stuffed dog, Bama (see above). The hospital also sent a booklet with child-appropriate relaxation tricks for dealing with stress: Take a very deep breath and gather up the pain into one big red cloud. Now, with all your strength, blow the red cloud out of you.

Since children this age have a vivid imagination (Kai recently compared a peeled banana to an octopus with four legs) and a naive sense of time, they should be told about the upcoming surgery only shortly beforehand. Some suggest that it is sufficient to prepare the child the night before (older children need more time to process the information). Others say 1 day for every year (i.e. three days in advance for Kai). I think we'll broach the subject with him a few days in advance, using the already introduced children's books as a point of reference.

The Child and Family Life program at Mott's Children's Hospital offers tours of the facilities, including the Intensive Care Unit, so that the child becomes familiar with the premises and equipment. The child gets to put on a hospital gown, ride on a stretcher, lie on an operation table, touch the oxygen tubing and put on an anesthesia mask. He will likely see other children who are recovering from surgery. So, when the day comes for his turn, things will be familiar. We're scheduled to take the tour next Monday, a week before surgery. They will talk about the hospital experience in general terms ("this is what children experience here") and then we can refer back to the tour when we talk to him about his upcoming visit ("remember the day we went on the hospital tour ...").

The hospital offers other supportive programs. Children who have undergone surgery can collect colored "hope beads" that symbolize the different stages of their hospital experience. It is a way of showing what they have been through and how brave they were. Every two years, the hospital hosts a reunion for children with congenital heart disease, allowing families to connect with others. There is a summer camp in Minnesota for older children with heart issues and several parent support networks, such as Hearts of Hope. We have unwittingly become members of a new club. If, as the statistics say, congenital heart disease affects 8 out of 1000 live births, the club is pretty big. It is a separate, parallel universe. One of many.