CHD conference

This afternoon, I attended part of the Congenital Cardiovascular Disease conference at Snowbird Ski Resort. This conference was intended for the medical staff caring for CHD kids, so there were many familiar faces. The main lecture I went for was the point/counterpoint of offering palliative care to HLHS kids. Though Bridger was not HLHS, I think this is a sensitive topic for any mother of a chronically ill child. Bridger's cardiologist, Dr. Puchalski represented the topic of offering palliative care to those diagnosed with HLHS and Dr. Birch, a CT surgeon represented the topic of not offering palliative care to the patient and moving right into surgery. I must clarify that these views are not specific to these physicians, but rather presentations that they were asked to give at this conference. Both of the doctors had strong points to offer. Dr. Puchalski pointed out that this is not a right or wrong answer and should be interpreted as a way to improve communication to parents of children with CHD. He offered many statistics on quality of life and development on children with HLHS. Dr. Burch presented the fact that if we only treated based on percentages, we would never have found cures for various cancers or other diseases. Both presentations were great and at the end, the microphone was open for comments. Two physicians stood and made their comments and when they were done, I walked up to the microphone for a comment of my own. I was so nervous and my whole body was shaking, here I am in front of a room filled with some of the brightest minds when it comes to CHD. I told them I was there speaking as a mom and continued on to say that we, as parents, rely heavily on the information given to us from our healthcare providers. I agreed with Dr. Pulchaski's point that parents deserve information, both positive and negative, regarding the child's prognosis and that this information must be free from the informant' s own bias. In the end, it is the parent that must live with the choices that they made about the care of their child. So, still shaking, I sat down. Dr. Cowley came to the microphone to ask the physicians at the panel a final question: If you had a child diagnosed in utero with HLHS, would you terminate it? One of the surgeons from another hospital grabbed the microphone and loudly said "I can answer that". He proceded, with difficulty, to tell about his daughter who twenty years ago was born with a diaphragmatic hernia. As a physician, he knew that the prognosis was not good, but they opted for surgery. She did not tolerate it well and he and his wife had opted to put her on ECMO (one last chance to live), she was never able to come off of ECMO and she died. He advised his fellow physicians not to answer that question unless they had personally lived the same situation they were discussing with their patients and parents. I was so grateful for this response, because it is absolutley TRUE! Even now, being a heart parent and knowing the life that may be lead, if Danny and I had another child and it was diagnosed with CHD, we would not be able to predict our wishes for that child. Sorry this was a long one.