Monday, November 2, 2009

What we can look forward to

From the annals of government health care comes this story of a British couple, "amicably separated," according to the story, who are battling over their son's life. Government doctors want to pull the plug--and so does the child's mother:

London, England (CNN) -- A baby born with a severe birth defect put its parents on opposing sides in a British court Monday over whether to switch off the child's life support.

The mother sides with doctors and favors disconnecting the baby's respirator. The father took the case to the High Court in London to stop them.

The child's life is "miserable, sad and pitiful," lawyers for the hospital said in court Monday.

They say the child's lungs fill with fluid every few hours -- giving him the sensation he is choking -- and that doctors must then use suction to remove the fluid, also causing the child to suffer.

The father took the case to court to stop them.

He says the baby can play and recognize its parents. His lawyers plan to show videos of the baby in court to demonstrate he responds to the world around himself.

What kind of birth defect is this? According to the story:

The baby, known as RB, is about one year old and suffers from congenital myasthenic syndrome, a rare genetic condition which means he cannot breathe on his own.

"It causes severe muscle weakness, feeding and respiratory problems, and the disease is progressive," the hospital said in a statement. [...]

The Mayo Clinic, one of the leading hospitals in the United States, says on its Web site that "different forms of CMS vary widely in their symptoms, from mild to severely disabling. With accurate diagnosis and appropriate therapy, even potentially fatal forms can usually be treated successfully."

Did you get that? This isn't a condition for which there is no hope (not that that would make it moral to end the baby's life, of course). This is a condition for which, apparently, if the story is accurate, treatment exists.

At least in the United States.

Where hospitals aren't owned by the government.

And where it's not customary, at least not yet, to treat a patient's disease by killing the patient.

1 comment:

Anonymous said...

How terribly sad. It's difficult though, to ascribe the physician's opinions (and a second opinion is always an option) to whether they owe allegiance to ethics of a Hippocratic Oath or to something else seemingly sinister.

Not familiar with myasthenic syndrome, so will consider the children born here in the US with muscular dystrophy and the eventual cause of death 30 years ago, or even children diagnosed with cystic fibrosis.

Thirty years ago, even early diagnosis with CF meant a child didn't live through 6th grade. Now, we know that multiple inherited gene alterations affect the course and outcome of chronic illness from differing degrees of cystic fibrosis.

When I first entered healthcare, CF was a 'death sentence', but with genetic testing (to determine extent of possible impact of organ involvement), and active and early detection of treatments to promote food digestion and breathing, and decrease inflammatory effects of chronic lung infections, lifespans have increased to college age or longer. I personally was involved in treating two kids that died at 15 and 18, but worked for one month in a specialty hospital where we were actually considering reproduction issues with a young woman.

Early in my career there was a poignant case in which severe genetic defects affected lives of twin infants and my obstetrician/gynecologist was on the opposing side of her husband, general medicine physician to withhold total parenteral nutrition. Definitely, not an easy ethical decision.

But, still, it's a heartwrenching picture of a responsive giggling toddler whose further treatment is stopped based on decision of one or the other parent. Hope it's not one like the Italy case of arrested development, where the parents are divorced (not acting in joint custody).