The Doctor Patient Relationship

In the past, when we visited the doctor occasionally for a cough-gone-on-too-long or routine well-child visits my relationship with doctors was pretty benign. I picked a doctor with whom I felt rapport and whom I could trust to recommend something alternative before antibiotics. Immunization was optional.

One of the first losses I felt when I learned about Wren's heart condition was the sense that we could afford to be distant from mainstream medicine. Instead, we would need it - depend on big machines and drugs with side effects I wouldn't have time to question. Frost would need to be immunized and Wren wouldn't get to have his homeopathic remedies to see him through a week of fever. Frost is five and hasn't had antibiotics yet - Wren would get them with his first surgery.

At first I was so thankful to meet doctors who thought they knew about conditions like Wrens' that I fell in love with pediatric cardiology. I would lie on the couch with my hands on my big pregnant belly and contemplate my impending 40th birthday and whether I could train to be a doctor in time to make it worthwhile. When I decided I couldn't I daydreamed about my could-a-been life as a surgeon.

I think it is typical, and healthy, for parents of a sick child to fall out of love with their doctors pretty quickly.

Its not that you don't appreciate and admire the work they do but you get to a point when you get angry and realize that they don't know everything, they're just playing the numbers game quicker than you and are following habits of care, some of which may be the best for your kid and some of which may not.

My moment of getting mad was when we were discussing Wren's surgical options. Our surgeon is very skilled and I have heard other parents and nurses calling him "the superstar". In Wren's case he favored a three staged procedure called The Norwood which would have converted Wren's heart to a univentricular system. He has good results with it. We didn't like the sound of that. I did lots of reading and found that in cases like Wrens when heart function is borderline pre-repair there are many opinions as to what is the best approach. The surgery that is performed is a function of the style of the cardiologists, the particular experience of the surgeon and the cases that have come in months before. Its not like feeding your data into a machine and getting a clear answer.

There are a lot of "if, then and maybe".

To his credit, our surgeon agreed to give an alternative approach a try because he believes in a team approach. That was the consensus and we feel lucky and grateful it worked but there was that moment at which I moved from trust to anger and then back to a more wary collaboration. In retrospect it was when I moved from a position of passivity to one of confidence in relation to Wren's team.

I don't know whether it was always my thing but in the medical setting it often feels as if there is a script that the patient (or patients parent's) get to follow. We are meant to receive the information at the right time and respond only on those topics. A classic example is the prenatal ultrasound when you know the ultrasound technician has seen something bad but s/he smiles and says "I couldn't get a good picture, I need the doctor to takea look at this." You know they know, they know you know and its just a little dance for the right person to give you the news.

When I met parents in our heart-kids support group they said that we will become the experts on Wren's heart and that I should apply for full copies of all his medical records, read and make a big file of them. That was how one parent found out her son had lost his thymus during surgery. For us, I was thinking "why?" Now I realize new doctors won't know Wren's unique heart issues, what has been done, that his ileac is blocked on the left. It would take them a long while to pick it all up from the file and they may miss something if its in a hurry. Even his doctors see many other patients between the times they see us.

Seven months ago I didn't know what a ventricle was and now I can talk in depth about heart anatomy and its anomalies, the cardio-pulmonary system, venous flow and pressures, drugs that alter them and clinical signs of poor perfusion, when its okay and when its not. Its impressive what we know, what we learn when we have to.

So we've come a long way but sometimes I miss the ease of going to the doctor in the old way. This week I have 2 doctors preventative appointments that may be like that. I am going to the dermatologist for a skin check (growing up in South Africa and Australia we are always watching out for skin problems) and to see our naturopath in case I am calcium and HDL deficient again.

Hope not.