It’s an impossible situation: Your one-year-old baby is sick with a severe and progressive disease that leaves him without any quality of life, so sick that even his doctors recommend removing him from life support, sick enough that you can actually begin to imagine that letting him go is the right thing to do.
Or maybe not.
A British mom and dad — now separated — are at odds over the decision to let their son be removed from life support. Baby RB’s condition is known as congenital myasthenic syndrome and causes his lungs to fill with fluid, even while he’s on the respirator. His mom, along with baby RB’s doctors, want to remove his respirator and let him go, calling his life “miserable, sad and pitiful,” according to CNN. The last three times they removed him from it, he breathed on his own for less than a half an hour.
But RB’s dad isn’t ready to accept that. And so he’s taken RB’s mother and his doctors to court, saying that his son recognizes and interacts with him. And he’s holding on to hope that a new doctor’s opinion may give RB hope for treatment, including a surgery that his father claims will allow him to bring RB home.
What has already got to be an excruciating situation now seems nearly unbearable: No matter which parent “wins” in court, the other could be left feeling that the final decision is not in their son’s best interest. In March of this year, a judge ruled that another baby, named only OT in court records, had the right to be allowed to die against his parents’ wishes, saying, “His life is valuable. But OT does not have the right to be kept alive in all circumstances. OT has the right to life . OT does not have the right to be kept alive.”
Complicating the issue is the fact that while CMS affects RB severely in the physical sense, his brain function is normal. According to RB’s mother’s lawyer, that’s an argument for letting him go. “‘In her mind, the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child,” Anthony Fairweather told the Daily Mail.
Here’s hoping that this family can come to a peaceful conclusion that, in the end, leads to the best outcome for RB.