Eric Brown’s writing, and the story he’s been sharing with us in bits and pieces, has always drawn me in. Moved me to tears. Made me want to be a better, more faith-filled person.
His latest post, though, an open letter to a doctor, really ripped my heart out.
You remember Eric Brown. He’s the father of Pearl Joy, the darling bundle deemed “not compatible with life” at 20 weeks in utero. This past Friday, the ginger-fuzzed angel celebrated her six-month birthday.
Life is still tenuous and stressful for Pearl and her family, but who would deny her the six months of divine love that has swirled around her like a gentle tornado? The sweet kisses and squeals of her two siblings? The millions of prayers received from far-flung Internet family “friends”?
A doctor, it seems.
A few days ago, Mr. Brown posted a deeply-felt open letter to the doctor who urged him and wife Ruth to abort Pearl after informing them that their unborn baby had alobar holoprosencephaly.
After you delivered those words and showed us the pictures, you advised us to head over right then and there to terminate her life. … An ultrasound and one old encyclopedia is all it took and you were ready to give up on our baby girl. We said, “no,” and you became visibly frustrated.
I don’t know what your morning was like on March 21st. Perhaps you and your wife got into an argument. … Maybe your tee time was cancelled, or maybe you too, have a child or a spouse with a disability and some days it gets so tough that you can’t muster an ounce of compassion for those around you. I know those days. I have them all the time. I don’t know, maybe you had the best morning of your life, and it’s just regular practice for you to treat families with distain, but according to the titles of some of your works, that’s probably not the case. If it is, stop. Use your education to write papers, but don’t sit down in another room with brokenhearted parents.
… I have a distinct memory of the phrases you threw our way that afternoon. “You’ve got 2 other children already. Can’t you find comfort in that,“ as if the goal is just to have a family, rather than to actually care for and shepherd these individual and unique children as the gifts that they are. We actually had 3 children at the time. Still do, and still will 10 years from now, regardless of what side of eternity they are on. You need to understand that losing a child is always hard. It doesn’t matter how long their life is, or whether their life is lived only in the womb, or for years outside of the womb.
I think it was reading the words “brokenhearted parents” that started the waterworks for me. I remember that feeling; it comes back, actually, quite sharply sometimes, although our news was decidedly more hopeful than the Browns’.
Yet we, too, have such a doctor to whom we’d like to address a few words.
Like the Browns, we were told midway through a pregnancy that our baby would have a disability. In our case, we learned in November of 2005 that our unborn baby girl had Down syndrome. Like the Browns, we were also advised to end the pregnancy.
The initial delivery of the news was kind enough, given by my OB—a lovely woman who played it right down the middle. Our “bad doctor” experience came a few days later, just as our hearts were ever-so-slowly beginning to heal. We went for the 20-week ultrasound to check on the baby’s overall health—her heart, stomach, and bones needed to be examined a little more closely now, as we had unexpectedly found ourselves in a “high risk pregnancy.” Unlike the Browns, whose faith is tested nearly every minute of every day with serious health concerns, our baby daughter’s health and prognosis were — and are — excellent.
Still, after this ultrasound, the director of the neonatology unit of a large New York City hospital came in to visit us. He asked my husband to step out of the room. Matthew nodded, closed the door behind him, and I stared at the floor.
To this day, we think about that moment. Too weak to raise a fuss. Too respectful of a doctor’s “authority.”
Why didn’t I say, “No. Whatever you need to tell me Matthew can hear, too”? Why didn’t Matthew say, “I’d prefer to stay with my wife, thanks”? We don’t know. We were foggy. We could just about muster the energy to put a foot in front of another. So we followed orders.
While my husband stood outside the door, the man told me his name and questioned me again about our decision to continue the pregnancy.
“Yes, we are sure,” I said. “I’m sure.” I said it flatly, sadly, but not because I was waffling. It was because I had a crushed soul and a broken heart. He seemed to seize upon this.
Do you understand what you are doing? Did your OB talk to you about the facts?
“Yes,” I said starting to get teary. I felt interrogated. I wanted Matthew back in the room.
Listen, he said, his voice softening. Think about it. I know this is hard. You feel pressure since this is the week you have to decide under the laws in this state. I can help you. Take a week, and I can help you go to Philadelphia, where the deadline is later. You can have a bit of time. Here’s my card. We can take care of it. I can help you.
I was stunned, saddened. Yes, I felt sick with worry about the new future unfolding before me, but I was certain about my decision to continue the pregnancy. An abortion was not going to happen. But here’s this super-smart, multi-credentialed guy — clearly very experienced with situations like mine — advising me to choose otherwise. Offering to help a vulnerable stranger break the law. He so pitied me—pitied my stupidity—that he would do that.
Matthew and I left there and never went back.
But I think about this: You know how we just listened when he sent Matthew out the room and we just … complied? How many couples just do what doctors say? How many, like us, are so weak that they just follow orders? Shuffle through the motions. And regret it later?
How many babies have been aborted because of the aggressive and manipulative bedside manner of doctors who sense when a couple is emotionally paralyzed?
And, finally, why are there doctors with the power to deliver this kind of news with such frosty prejudice? And who respond with such anger, rejection, and condescension when we choose life?
Many times in the past six years Matthew and I have wanted to bring our Magdalena back down to that office to show Dr. So-and-so what a bundle of crazy, joyous energy she is. We’d show him this photo of her with her older sister when she was 1:
And this one of her brother holding her hand while she gets a dreaded haircut:
Are these the faces of scarred siblings? Are they burdened and ignored? Are they paying a price for having Magdalena as their sister? I think not. And do you know who knows this for sure? Only we do. Because it is our family. Our circle of love. Made by God; we are its caretakers. We will encourage growth and pray we can help these lives under our care to thrive; but God giveth and He taketh away.
And as Mr. Brown says so eloquently in his powerful letter, there’s a way to honor the medical profession and its awesome powers while also giving a nod to the miraculous glory of God—or, if you prefer, a higher power. Mr. Brown advises this doctor to think about this:
There’s no way to know the destiny of these babies you are diagnosing, and you ought to handle it as such. It would be an honor if you would print out one of these pictures of Pearl and put in your book where you previously had sticky notes. That way, next time you must deliver the heart breaking news to a young family, you can pull out the picture and allow for hope. Maybe actually put your arms around them and say,
“Listen… Alobar Holoprosencephaly is often not compatible with life. Statistically speaking, there’s a strong chance that your child may not survive to term. I can’t say for sure, but you need to know the severity of this diagnosis. What I can say for sure is that this is a picture of Pearl Joy Brown. She has an incredibly difficult and complicated life. She has all sorts of trouble, but you should see her smile! She has already celebrated her 6-month birthday and is capable of things no one ever thought possible. There’s no way to know if she will have a 1 year birthday or even a 7 month birthday for that matter, but if you want to hope, I will hope along side of you. I can promise you it’s worth it. If you don’t believe me, look it up for yourself. There are families all over the world who chose to hope in the midst of an extremely poor diagnosis. Some of these children lived outside the womb for only a few moments. Some of them did not make it to term. Some of them have lived for many years, but all of them have mattered. Your child is already here. Your child is alive today, and the length of her life has no bearing on the meaning of her life. I can tell you that if you choose to hope in spite of this poor diagnosis, you won’t regret it. Your heart is going to be more broken at times than you ever thought possible, but this child is a gift to be treasured. If you chose to hope, I will hope along side of you.”
Can someone please write a script like this for doctors to follow—faithfully follow!—when they find themselves in the position of counseling scared, confused, and vulnerable patients after a prenatal diagnosis?
A new friend—new because she’s just joined the local Down syndrome mothers’ group I belong to—shared with us the way she was delivered the news about her unborn baby. This happened a month ago. Our experience was seven years ago. Nothing has changed, it seems.
This pregnant mom was told that the first round of testing seemed to indicate the possibility that her baby has Down syndrome. She went ahead with a more definitive test and waited, sick to the stomach with worry (I remember the feeling so well), until the doctor called with the news a few days later.
“Hello, Mrs. X. This is X from X Hospital. It’s Downs.”
It. Is. Downs.
It? The baby? The baby IS Downs?
It? Your life? Your life is Downs?
I recently read that a huge number of parents (if I recall correctly, it was more than 80%) remember the exact words—the EXACT WORDS—used to diagnose their special needs child when asked about it as much as 25 years later. Do you remember anything said to you 25 years ago? The exact words? If you have a child with special needs, those words, that day, the color of the phone on your office desk that you answered … the temperature of the bath water in which you bathed your giggling toddler that night while tears streamed down your face … the tightness that seized your insides, making it impossible to eat. Yes, you remember this. You remember it decades later. Yes, you do.
Eric Brown and I agree on something else. We have been buoyed by dedicated doctors and medical professionals who have been determined to help ease the struggles that our families go through. They are truly called to serve, to solve, to soothe. Their expertise and skill humbles us.
So many doctors, since that first visit, have left me crying with gratitude for their loving care for my daughter. Many even have a gift for speaking with frank dignity about her diagnosis, her prognosis, the options before us. It can be done—and is done so well—in so many specialists’ offices around the country.
But why is the initial delivery of news about the health concerns of an unborn baby so corrupt? If you think it’s just Mr. Brown, me and my friend, you have some wool to pull back from your eyes. Among my many, many dear friends who have children with Down syndrome, every single mom has a story like this. Every. Single. One.
Thank you, Eric, for writing a letter that is both filled with truth and grace. Yes, it’s an open letter, shared with all of us, but Mr. Brown is also putting a stamp on it.
From his Twitter feed yesterday:
This is ready for the mail. Pray that it actually helps & isn’t interpreted as antagonizing.
I especially love that he includes this photo of the miraculous Pearl Joy from her 6-month-birthday photo shoot:
May Eric Brown’s words bring about a miracle of transformation in that doctor. One as beautiful as this miracle.