A visit to Primary Children's Hospital

We met with the palliative care team at Primary Children’s Hospital. I am impressed with the time they gave us and the genuine concern that they have for our family and the difficult decision that we are making. The team consists of several professionals including the fetal heart coordinator, a pediatric resident, Chaplin, nurse practitioner, and social worker. The team spent 2 hours with us discussing some of the challenges with the decision we are making. I am thankful that they are so interested in the reason that supports our decision. At first glance a person might be offended by this, believing maybe that they are questioning the reasoning, but really they want to understand why we made our decision so that they can further support our choice through the care they provide before and after the birth of our baby. At the completion of this meeting Michael is about 90% in favor of comfort care and I am about 80% in favor of comfort care.

While we were at Primary Children’s Hospital we also got to meet with the pediatric cardiologist. We met with a different cardiologist and I liked how she interacted with us better than Dr. Menon. She answered many questions. Its interesting how one question leads to another question and yet another… One of my biggest concerns about doing the surgeries is the chance of mental disabilities. Having a child with a physical disability like HLHS is hard enough but I do not want to inflict the pain and suffering of this physical disability on a baby/child if they are also going to have to endure a mental disability. The cardiologist told us that the chance of a severe mental disability is unlikely. This helped relieve some of my concern, but also it created more internal conflict about which decision to make. At that point I was about 60% in favor of comfort care.

We also visited the cardiac ICU and an HLHS baby that was born just a few days before. He had undergone the Norwood procedure about 48 hours before our visit. Seeing him lying in the warming bed was not too shocking for me (since I have worked in the ICU with all the monitors and IV’s and lines etc), and Michael even seemed to handle it well. The baby was still intubated and on a ventilator, he had 8 IV pumps/lines attached, I am sure some antibiotics and others were medications to control his heart. He also had an arterial line, central line, 3 chest tubes, and Foley catheter. In addition his chest was still open and will stay open for a while longer until the swelling goes down so not to cause compression of the heart when closed. You can imagine, very little of the baby actually showed underneath all of these lines and equipment. In some ways I think that Michael dealt with the sight of this beautiful baby attached to so many scary lines and equipment very well, but I think that’s because he does not believe that our baby will ever be in that condition.

As you can see our decision is tortuous and my conviction in comfort care does waiver a bit; although, I have never leaned towards doing the surgeries.