Letter #22

Dear Future Physician,

Congratulations on your choice of careers. I know it has been a long road to get here and that the learning never stops. I have a child with Congenital Heart Defects. We were rushed to the hospital when he was 8 days old as he was in heart failure and literally dying in front of us.

To the ER doctor: I understand that when a child arrives in heart failure, you are the expert and have certain protocols you must follow. I also understand that you run a very busy ER at the Children's Hospital. But please don't make me feel as if our unplanned arrival was your biggest inconvenience of the day, as if I should have known he was going to go into heart failure. Keep me informed, be honest with me. I am willing to answer your questions and provide answers to whatever you need. In return I expect that you will update me and include me in choices for his health care. Don't send in the hospital's social worker to do your job. Take a moment and speak with me. I need the assurance that you are doing all you can and I need to know what the next step will be. If you need me to leave the room, have a nurse explain why. Don't just order me out. That is my precious baby you are working on and I need to know why you would want me to leave him.

To the doctors in the PICU - thank you. Thank you for holding our hands and for drawing countless pictures of his heart so that my husband and I were able to get our heads around what was happening. Thank you for finding a computer and printing out the information for us so we had a tangible resource to refer to. Thank you for explaining each and every wire and tube, the reason they were there and for being honest with us about his likely outcome. Thank you also for encouraging us to talk to him and to touch him and for arranging for us to hold him again as soon as he was stable enough after surgery. Thank you for making us feel like we were a vital part of his care and for rebuilding our confidence in our ability to take care of our baby.

To the pediatric Cardiologist - your honesty was appreciated. The fact that you also provided us all of your numbers and then followed up with us when we moved to the other Children's hospital meant a lot. We appreciate that you answered our questions about surgery and the outcome as well as other organ damage. You didn't scare, you didn't give false hope. You put it into terms we were able to understand and digest at the time. Thank you for also being concerned about our 2 year old and for arranging to check her for CHD in order to give us peace of mind. Thank you for remembering we are a family, not just a sick baby.

To the Med Students - when you do your rounds every morning, appreciate what a strange feeling it is for parents to have 10 or more people standing around their child's bed as if they were a science experiment. I know you have to discuss each case, but please, take the time to learn our names and say hello. Also, learn my son's name. If he is awake, please say hello to him before you discuss him. Make eye contact with us, and don't assume that we don't know anything because we aren't wearing the stethoscope.

Good Luck Future Physician, I hope this is helpful to you.

Wendy - mom to Christopher who has multiple Congenital Heart Defects and who had emergency heart surgery at 10 days old