Decision

We have to warn you that this post will contain details of what we have struggled to understand, and what we have decided to do. Articulating this will help us in our grieving process. We do not expect you to read this, nor will we fault you if you can't. -Gus and Dianna

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Wednesday we went in for an echocardiogram, which is a detailed ultrasound that is used to evaluate the heart. The results revealed that Bryce has a good heart. Although this might appear to be good news, it has to be viewed in the broader context of what is happening.

The most severe abnormality that Bryce has (or more accurately, what the ultrasound can diagnose) is called a congenital diaphragmatic hernia (CDH). The diaphragm separates the contents of your chest (heart and lungs) from the contents of your belly (stomach, intestines, liver, kidneys). Bryce's diaphragm didn't close completely, and has a hole on the left side. Bryce's stomach has migrated through this hole, and is situated next to his heart, as are his liver and intestines. Those of you accustomed to looking at ultrasounds will be able to see that Bryce's heart is right next to his spine, and the other dark mass in the same plane is his stomach (for orientation, he is facing down, head is left, his spine is the curved dotted white line).

This is a serious problem because Bryce's lungs have not properly formed due to the crowding in his chest cavity. As a consequence, Bryce's lungs will ultimately fail to form completely and will not gain adequate strength through the second and third trimesters. The surgery that could potentially correct the CDH is only performed in two hospitals in the country and is reserved for use in cases where CDH is the only problem to fix. Minimally, Bryce also has a bilateral cleft lip and palate and kidney dysfunction. The combination of these abnormalities points to an underlying chromosomal or genetic problem; the identity of the specific abnormality is most likely Trisomy 13, or one of several possible syndromes. Bryce's poor fortune can be summarized by the following numbers - based on the quadscreen results (from weeks 12 - 17) he had a 1:13,700 chance of developing an aneuploidy other than Trisomy 21, and even smaller odds for the other potential syndromes. Bryce's abnormalities could not have been seen on the ultrasounds at 9 or 13 weeks. With the low numbers received from the quadscreen, his condition unfortunately is something medical science could not catch until now. The first wave of results from the most recent genetic testing will be back tomorrow, but due to the extent of what we, and several doctors have independently observed by multiple ultrasounds, this information will be important for the future, but will not influence what we must do now. Unlike Trisomy 21, Bryce's abnormalities are not survivable.

We have made the decision to end Bryce's life on Friday. Bryce will have the best quality death that we can give him. Bryce's heart will stop beating. Death will take seconds and will be relatively painless. Bryce has most likely never known a life that wasn't uncomfortable, as the problems he endures have been with him from the earliest stages of growth and will continue to worsen as he develops. To put it bluntly, there is simply no chance for his survival with or without intervention, and if we were to allow nature to take its course we would be endorsing greater discomfort in utero and a prolonged and painful death by asphyxiation. That is something we can not, and will not tolerate.

We could have chosen to proceed by putting Dianna and Bryce to sleep under anesthesia, and upon Dianna's awakening everything would be over. We will not go into the details, but this option is not something that we can do. Bryce is far enough along in the pregnancy that we can deliver him and hold him in our arms. Bryce will be baptized, circumcised and buried in the Zeiner family plot in Marin, CA with his Grandfather and Great Grandparents. We take this decision very seriously and we want to respect and love Bryce the best way we know how.

As parents, we are charged with loving and protecting our children. Bryce's existence was not an accident or mistake, it was a choice that we consciously made because we wanted him to be a part of our family. Our decision to end Bryce's life now will prevent him from enduring pain. As his parents who love him this is the only thing that we can give him.

-Dianna and Gus