Visit to Brody's Birthplace

This past Tuesday afternoon, Jason and I had the opportunity to visit the University of Minnesota Hospital, where Brody will be born.  We had no idea what to expect, or much of an understanding of who we would be meeting with, but certainly were eager for more professional opinions regarding Brody's care after he is born.  Fortunately, the Director of Neonatology, Dr. Thomas George, stepped into the waiting area and called our name.  We quickly came to understand who he was, and more importantly, that he cared about each and every life he was dealing with.

Dr. George's first question for us was, "does your little boy have a name yet?"  He had already gained our trust.  We were then introduced to the social worker that we will be developing our birth plan with, and another genetic counselor.  I was certain that I was going to be strong throughout this meeting, focusing on the important decisions and listening closely to all of their professional advice.  But after we all had sat down at the table, and everyone had introduced themselves, I began to lose it.  I guess I was not prepared to talk about the different ways that my sweet son may die.  When I thought more honestly about it, that is exactly what we were about to discuss.

Clearly these gifted professionals have dealt with many families dealing with this type of loss as they began to say things that were comforting and compassionate.  Jason and I again started to feel as if Brody is the most important child being born in 2011, and that they had all the time in the world to listen, educate and assist us in making the best decisions for Brody.

We have been strongly leaning towards "comfort care" (or palliative care) for Brody after he is born.  The goal of this approach is to make your baby as comfortable as possible along with avoiding any interventions that will simply prolong the inevitable.  If the doctors continue to confirm that Brody's condition is incompatible with life, and that interventions such as oxygen and feeding tubes will only prolong his death, possibly causing him to feel more discomfort and stress, then we do not want to put him through that.  That being said, I have been having a difficult time finalizing this decision.  I want to be completely informed of all of our options, understanding just why some people choose certain levels of intervention, and what the outcomes have been.  I want to KNOW that doctors do not simply give up on these children, and that if Brody's condition after he is born reflects healing or appears hopeful, that we are ready and able to take a different approach and support him appropriately. 

Fortunately, Dr. George has cared for many babies with Trisomy.  As we listened to him speak about our various options, it became very clear to us that he too believed comfort care was the best decision for our child.  In short, he explained to us that a few hours with Brody up to a few days was the most likely scenario.  He explained that many families choose this approach so that the focus of the short time with their child can be on loving them, holding them, and allowing them to pass on peacefully and naturally.  We did spend time discussing the least invasive interventions, as we know many loving and well-educated families choose these options.  But, Jason and I feel most comfortable leaving Brody's life in our Father's hands as much as possible, and want to avoid having to "remove or turn off" any intervention at a later time.  We feel so much peace in knowing just where Brody is going from here, and do not want to keep him from that perfect place where his condition will no longer exist.

We did not have to put any decisions in writing, and the plan can be changed at any time, even after Brody is born.  However, at the end of our meeting we both felt a lot of clarity and confidence in our thinking, and were definitely thankful for the amazing team that we are working with.  When Dr. George asked us if there was anything else we wanted to discuss, I could not help but thank them for respecting Brody so much.  I wanted them to know that we so appreciated them calling him by his name throughout the meeting, and for valuing each decision about his life even when they cannot ultimately do anything to change the outcome.  We looked at this brilliant doctor in the eyes as he began to cry.  Hopefully, it was because he feels tremendous satisfaction helping families like us work through these tough decisions.  And hopefully, he knows that although we would give anything for Brody to stay here with us, we are just looking to him to assist us in making Brody's transition from our care to our Father's care as perfect as possible.  And hopefully, he knows we see him as yet another way God is able to work directly with us here on this earth.