Some overdue comments from our support group meeting...

Last month a large gathering of parents from our CHD support group met with the Directors of our local Children's Hospital. The idea was to build some bridges between the Heart Center and our group and to hear the answers to some recurrent issues discussed in our group, in particular:
1) What is the long term prognosis for our kids?
2) How do you / should we handle second opionions as families try and decide where to have a surgery performed?

I felt unhappy after the meeting which is why I haven't written about it before. It was informative, surely, but less about particulars of Wren's condition and more about the field in general and how the team works on issues and approaches to various cases. Here are a few points that were discussed.

Q: What are the long term outcomes for kids undergoing repairs for complex CHDs today?
A: We don't know.

Since the field is so new we don't have historical data going back 50 years. Developments in the field are rapid and the implications of changes in how surgeries are performed are not known. As children age the issues they face inform the surgeries that are performed today. There need not be a full study written up, surgeons meet and discuss what they are seeing and individuals come up with possible solutions.

What is the future for a child with a fontan? Its difficult to know because the children who are now teenagers had a very different fontan to that which is peformed today. There are a large number of patients but we still don't know what the future holds.

When families ask the cardiology team this questions "we have to give the parents an honest answer" and say we do not know the future. The technical advantages and impact of modifications will only be know out in the future.

With Fontan kids, we think that most of them will end up in transplant but there are possiblities for palliative steps and improving the performance of the fontan before that point.

Q: How do you feel about second opinions?
A: We encourage them and seek them ourselves on some cases.
BUT there is not enough volume in congenital heart surgery high volume centers to show significant statistical differences in mortality outcomes. Centers may show 96% survival vs 98% survival but those differences are not statistically significant. Participation in databases tracking outcomes are voluntary and many institutions do not report. This means we don't have the data to compare outcomes accurately and say which institutions does a surgery better.

Added to this is the degree of variation in surgical approach. A second opinion may well conflict with the first one because surgeons do not approach repairs in a unified way.
1) Surgeons favor procedures they do well, are comfortable with and believe are successful.
2) Surgeons use different thought processes in deciding what surgery or stages will lead to the best result.
This can lead to confusion for parents when faced with two conflicting approaches. Who can say which one is right? It is not know what is best? You have to choose what feels best.

I asked why the two surgeons / cardiology teams could not consult with each other and come to an agreed approach and plan for where and what surgery to perform. This was greeted with some laughter and the assurance that this would not happen because doctors in the field are also 'competitive' and believe in their approach.

I still do not really understand my response to their contribution. I felt really uncomfortable during the talk and afterwards I have had trouble thinking about it - almost as if I am avoiding something. Honestly, I don't know what. Perhaps it is the degree of uncertainty we all feel reflected back at us from the medical team. In some way it is easier to believe that doctors have a good idea of what the future holds for our kids but choose to keep it secret rather than believing they have some framework for assumptions but are learning while doing.

More than that though, I think it framed for me the difference between being a parent and medical professional. Even if you care for your patients there is an objectivity and generality about the work that is at odds with the specific love and advocacy that comes from being a child's parent, protector, voice in the hospital and ultimate guardian in such major life changing or even life and death decisions.

It has made me reflect on the role I play as a parent and realize again how important it is to act as an advocate and take responsibility for exploring options in the decisions that are offered to us.