The little boy I wrote about two weeks ago with congenital myasthenic syndrome has died. After hearing every medical professional talk about the pain and suffering his son was going through, his father decided not to contest his ex-wife’s and the hospital’s petition to remove life-saving technology. The ventilator was removed last Friday, and Baby RB died shortly thereafter.
Thus, the judge in this case was not forced to make the first-ever decision to remove life-supporting technology from a baby with no brain damage when a parent wants to continue such treatment. He seemed relieved in his public statements.
This particular case is very sad, but it sets no precedents other than being highly publicized. But such publicity might be dangerous to other babies identified with that condition.
There have been other, more positive, outcomes for children born with that condition, as reported in The Telegraph:
When Lucie Newcombe was pregnant with her son Finley, doctors urged her to undergo an abortion (emphasis mine) after a scan revealed he had club feet, which could indicate major disabilities. Her child, medical experts told her, would be ”incompatible with life”. Though she and husband Craig insisted they wanted their baby no matter how severe his disabilities, they came under considerable pressure to abort – right up until three weeks before his birth. (emphasis mine)
Today, Finley is a chatty and playful two-year-old, even though after he was born, he was diagnosed with CMS. However, the child was one of the lucky ones: he responded well to a drug treatment. But his parents remain distressed that they were put under such pressure to terminate the pregnancy.
”I told the medical staff this is still my child and I want him just as much, whether he is healthy or not,” says Mrs Newcombe. Yet at every hospital appointment the issue was raised. ”Even towards the end I was told ‘it isn’t too late’,” she says. When Mrs Newcombe refused to consider an abortion, doctors said that they would not ”intervene” if the baby stopped breathing at birth. (emphasis mine)
Doctors intervened for Baby RB, and ultimately they couldn’t help him.
Finley was born with a similar condition. Doctors told Finley’s parents they shouldn’t even bother with him, should get rid of him, before he was born. And if he had stopped breathing AFTER he was born, they wouldn’t ‘intervene,’ which obviously would have meant he would have died. Yet his body responded to medications.
The Hippocratic Oath is no longer required for recitation by students of most medical schools, and the whole thing is a little weird with the appeal to Greek gods and goddesses. But there are parts I hope could be brought back, and even that doctors would embrace enthusiastically, such as the following:
I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.
The Works of God 
Two years ago we found out we were pregnant with our son Nathaniel, who at 16 weeks we found out he had Triploidy. EVERY single doctor we saw for the next four weeks told us to abort. They would talk to us, listen for his heartbeat, and then tell us to abort. It was heartbreaking and discouraging. Even doctors who attended evangelical churches were telling us our son was not a viable pregnancy, as WE were listening to the heartbeat. We would not abort, and went to numerous doctors trying to find a doctor who would support us and our son. We were also told that if he lived to birth (the majority of babies with Triploidy do not live 40 weeks in the womb because the disease is so fatal) that they would not provide life support to him. As a believer and one who loves my son more than anything, I can’t tell you what it was like to hear this from every medical professional we talked with. At 20 weeks our son was stillborn, due to complications. We are believers and know that our son was formed by God’s hand. But if we weren’t, I don’t know how a person would stand up to that pressure.
What a heart-breaking, God-glorifying story. Thank you for your faithfulness to your son, and your trust in our good and sovereign Jesus. May God turn the hearts of doctors all over the world toward him so that the next parents in your situation hear something much different than what you did.
I appreciate you blogging about things like this. I sometimes live in a different world and don’t bother with the news most of the time. I subscribe to your blog and have really enjoyed reading your posts, although I don’t always comment. This is a very sad story. I feel for moms and dads that have to make such hard decisions. I can’t even begin to imagine. I have never even had a miscarriage and the worst thing that has happened to my children are some learning problems and ear infections. We have been quite blessed with our children’s health. All of that to say, that you bring to light things I don’t know about or even think about for that matter. Thank you for opening my eyes to the struggles of these parents and children. God uses people such as yourself more than you even know.
Thanks for the encouragement, Michelle! God is good, even when the stories are so very, very hard.