Ursula: On doctors, faith, and the power of love

For the last few weeks I have been following the deeply moving story of a baby girl, Pearl Joy Brown.

At the midpoint of her third pregnancy, Pearl’s mother Ruth was told that Pearl had a condition that was “not compatible with life.”

Defying the advice of at least one doctor who advised Ruth to induce labor at 20 weeks—definitely not compatible with life!—Ruth and her husband Eric went ahead with the pregnancy.

Ruth is a beautiful writer. She wrote this just after the diagnosis:

We just don’t know what Pearl’s future will look like. There is a chance that she will not live to delivery. She may only live for minutes or hours or days once she is born. Or we may get to spend years with her! We take comfort knowing that God has purposefully and lovingly formed her body and that He knows what each one of her days will look like. But we don’t. So we live in this world where we pray for the best and brace for the worst.  I’ve bought a few sweet newborn clothes. And I just visited a cemetery with my husband. … We know that her life here on earth is likely to be short. And we know that after 10,000 years in heaven her time and ours on earth will all look like small specks of time.

I couldn’t help but think of the Browns (whom I’ve never met) when a few days ago I saw this news story from the U.K.:

In a study published in the Journal of Medical Ethics, doctors … asked for lawmakers to change the current British legal system to allow physicians to have greater influence in cases with terminally ill patients, adding parents’ religious beliefs should not be a “determining factor.” Researchers argued parents waiting for a miracle are putting their children through unnecessary and painful treatments.

Here’s a brainy New York doctor, not affiliated with the study, agreeing wholeheartedly:

Dr. Arthur Caplan, who heads the division of medical ethics for NYU-Langone Medical Center in New York City, told ABCNews.com he believed doctors should have the final say because they advocate for the patient. … “You have to take beliefs into account but you can’t let any parent for any reason hijack what you as a doctor believe is in the child’s best interest,” he explained. “If you think what they want will cause pain and suffering and further treatment is pointless, a doctor should not do it even if the parents say Jesus spoke to them.”

But there is the small matter that people disagree on what constitutes suffering, and that patients and doctors don’t always share the same belief systems. And miracles do happen.

That brings me back to wee Pearl Joy. Ruth’s post, above, was written months ago. Over the course of the pregnancy, Ruth’s husband wrote eloquently about the challenges of their new normal.

In my head, I had assumed that Pearl’s life was going to be one of those scenarios where God uses the foolish and weak of the world to shame the wise, but that was not the case. There was much more to see at this ultrasound than we could see at our last one … I could tell you all the details of what they saw, but there’s no need. Just know that nothing about her brain and face have come together as they normally should. 

I kept asking questions about how well she will be able to use her eyes and ears and other organs, and eventually the doctor just stopped me … Right now, it is Ruth’s brain that is telling Pearl’s body what to do, and when we cut her umbilical cord, she will be on her own. 

…I started to realize that there truly isn’t a “3 years down the road” for Pearl. There is no having the privilege of feeding her, wiping her face, or helping her to breathe. The doctor said if we are looking at 15 minutes, 15 hours, or 15 days, then she expects us to be more at the 15-hour point.

Are these the rantings of a crazy person? Are the Browns the kind of irrational people whom doctors should be on the lookout for because they want to cause pain and suffering in expectation of the miraculous? I humbly submit that they are not. These are the parents who merely want to give life to their child, to care for her, to have the “privilege of feeding her, wiping her face … helping her to breathe.”

Who are we to question their motivations? Their faith? Their sanity? Who are these doctors to play God?

So here’s the good news. After hearing that Pearl would live for about 15 hours, the family is days away from celebrating her one month birthday. She’s been called a “fighter” by more than one doctor. Is she a miracle? Maybe. The only other explanation is that the doctors who told the Browns that Pearl wouldn’t live more than 15 hours were wrong.

It’s still a long road for the Browns, or, perhaps, a short one, but it has been and will be filled with joy. Gratitude and joy. And “miraculous” events that are not found in medical textbooks.

If you don’t believe me, join Twitter and follow @ebrown_photo.

22. August 2012 by Ursula Hennessey
Categories: Parenting | Tags: Doctors | 4 comments