I was getting ready to work on my blog, prepared to write about truly enjoying James’ third birthday without any of the anxiety that has come each year at this time, when I read End of Life, at Birth, an Op-Ed piece that appeared in The New York Times August 5th. The author, April R. Dworetz, is a neonatologist and an assistant professor of pediatrics, specializing in neonatology, at Emory University. After I read her piece and the comments that followed my plans changed.
Overall I agree with Dr. Dworetz, more information and more discussion with parents who have babies in the NICU will lead to more thoughtful decision-making. Parents need to be well-informed throughout their baby’s NICU stay. Just as in any other critical situation involving a loved one, you need to know what you’re up against, and what outcomes are possible. Part of that burden falls on the doctors caring for the baby, and part of that burden falls on the parents. Parents have to be willing to hear the information being provided, without that critical component doctors can only do so much.
I disagree that she, or any other doctor needs to make the life or death decision for me. With me, yes. Involved in discussions of risks, treatment options, possible outcomes (ALL possible outcomes, not just the bad ones), and complications, yes. Not in place of the perspective that only comes from a loving parent. This is after all a baby, with a unique set of circumstances and a unique outcome, not a statistic.
What really made my blood boil was reading the comments that followed the article. Some comments were from families who actually experienced having a micro preemie. I completely respect their perspectives and opinions regarding treatment and family involvement. They’ve lived it. I was shocked that the majority of comments by others suggest babies born at 23 weeks, 24 weeks, 25 weeks, ‘all babies under 28 weeks’, ‘all babies under 31 weeks’ gestation should not have life saving measures attempted because the financial burden is too great and the outcome is too bleak. Ill-informed people suggesting that all of these babies have a poor quality of life, and worse, that the decision to save them or not be based on the financial burden they become to their family and society. Is that how we’re going to measure the value of a life, by the financial burden someone poses? That is a dangerous and very slippery slope. I don’t want a political debate, but wow, I’m truly shocked at this mind-set.
I can’t even begin to put into words the anger I feel at reading the statements that followed this article. I have admitted before that I have a skewed perspective on the outcome of 23 weekers, not only from how James is doing, but because of so many others I know who are former 23 weekers and are thriving. I also know many 23 weekers who have severe challenges and require very complex 24 hour care. I know many children who were born full term with unexpected complications, who also require very complex 24 hour care. Does having these challenges make their lives any less valuable? Absolutely not.
We are quick to judge when someone’s life is unlike our own. When someone requires a wheel chair or a walker, when someone looks different, acts different, talks different, requires assistance to dress or eat, when they are dependent on a caregiver we assume they have poor quality of life. Who are we to judge? And If they do have a poor quality of life, it may be that we have contributed to that becoming a reality. As a society we look away, make fun of, and ostracize adults and children who are different from ourselves. When we begin to look with compassion, love, and respect perhaps we’ll have the perspective we need to determine quality of life.
Whether or not to perform life-saving measures is a very complicated issue. I understand that. I hope it is one that can be discussed after much education, with all possibilities on the table, and with a little compassion.
For more about this topic please check out, How Young is Too Young? Pushing the Limits of Viability