We have the same birthday, she and I. We were born worlds apart, both geographically and culturally, but on the same day of the same month in the same year. I noticed her birth date, right there on the front page of her daughter’s, my patient’s, medical chart. Her daughter, who should have been a princess. In a family full of men and boys, sons and nephews, the baby was the first girl to be born in over 40 years. The family prepared for her birth, overjoyed, buying frilly dresses and pink bedspreads and dolls. But it was not to be. Mother was stricken with intrapartum hemorrhage and baby was born with anoxic brain injury, doomed to be neurologically devastated.
And that’s not even the worst part.
She tells me that she and her husband sometimes imagine what it would be like if her daughter, now turning one, were born healthy. They can almost hear her say “mama” and “dada”, can almost feel her hugs as she runs, laughing, into their arms. They wonder if she would be crawling now, walking now, what food she would like best, and if her older brother would share his toys with her. They mourn what could have been, what should have been.
That’s not the worst part either.
In their home country, they were told to leave her to die. They were told not to pursue medical care, that God would take care of “the situation.” And that’s when they packed their bags. They ravaged through bureaucratic red tape and procured visas. They left it all, their supportive family, their grand estate, and moved to a small apartment in the United States so they could get medical care for their daughter in the first world. In their home country, they were royalty. And here they work menial jobs to make ends meet. She works at a local supermarket, bagging groceries. One day, she tells me, a customer was checking out groceries with her own daughter, who was particularly rambunctious. The customer was frazzled, stressed, in a rush, and frustrated with her daughter. The customer turned to the woman, this grocery bagger, this almost-but-not-quite-bereaved immigrant mother and said to her, “She’s driving my crazy. Do you want her? Just take her.”
And that was the worst part.
Does she want her? Well, not her exactly, but yes, of course she craves a normal, healthy daughter. What a horrible thing to hear. What a horrible thing to say. It’s not even that the customer was trying to be mean; it’s not human cruelty. It’s the cruelty of the universe, the cosmic unfairness of it all, coupled with human indifference and sarcasm, that combine together to create a vortex of heartbreaking tragedy.
I take care of children like this every day. Children with chronic illness, children with neurologic devastation due to the unfortunate hand that was dealt to them: prematurity, trauma, genetic disease. In order to survive as doctors, there must be an emotional barrier. We can be empathetic, but we cannot get too close emotionally, otherwise we cannot function. But this one hit me hard. Maybe it’s the fact that we have the same birthday. Or maybe it’s because I, too, suffered intrapartum hemorrhage, but because it was expected and planned for, the baby and I did incredibly well. Or maybe it has to do with the fact that I am freshly back from maternity leave after recovering from said complicated delivery and I am physically and emotionally exhausted. This one broke through the emotional barrier and catapulted me from the land of empathy to the state of feeling.
I want to say to her: I feel you. I feel your pain and your heartbreak and you are not alone. Let me bear some of it for you so you can take a breath. Right now, as the discharge papers are being printed and you are collecting your things, let me shoulder some of this pain for you. I don’t say it. Maybe I should but I don’t. I squeeze her hand and wish her well and tell her that her daughter is lucky to have her. I thank her for the opportunity to take care of her daughter, and I say goodbye.
Oh. Oh. Oh.ReplyDelete
That made my cry. I know - I *know* - that she could tell you were really with her.
Thank you for sharing. I have fallen in love with many happy, healthy special needs families. I truly believe happiness is relative. After having a child with medical challenges, I have had to question what it means to have a happy life. My child may not know the joy of graduating medical school, but he will know the joy of attending school. Most of the busy physicians I know aren't all that happy. Many of the stay at home moms I know are overwhelmed and wish they had more time to just breathe and smile. I look at my patients with autism who love their trucks and are happy playing with one truck all day and my neurologically "average" patient who is the same age struggling with depression and anxiety and I re-set what the "norm" is over and over again. I check myself. I check my privileged view of what is "normal" as an able-bodied, neurologically average person.ReplyDelete
Thank you for sharing your perspective. Your squeezing her hand probably gave her a surge of strength. And sometimes that it all as mamas need to keep us going :-)
I hope your patient has a strong community. It is totally normal and natural to think about "what if" her daughter had been born differently. She shouldn't feel ashamed.