An Open Letter
AN OPEN LETTER, January 27, 2013
I don’t know why I have chosen to post this publicly, rather than sending a private email. I’m posting this with a decent amount of trepidation, as I know that many people read these words, and I do not want my intentions to be misunderstood. I’ve chosen to withhold a name for many reasons, not the least of which is the fact that my goal is not to be passively antagonistic and condescending. Nor is it to try to pit people against each other or to start questioning character. After all, we are all just trying our best, here, but I feel these things need to be said. Perhaps my hope, like with everything else on this blog, is that we can share, edify, and encourage each other as we attempt to walk through this world that is wrought with brokenness, looking collectively toward the day when everything will be redeemed and in the words of C.S. Lewis, “Heaven, once attained, will work backwards and turn even that agony into glory.”
I can’t tell you how many times I’ve sat down and written to you, only to find myself deleting the files out of shame and embarrassment. You are much older and more educated than I am, and deserving of honor and respect. But more than that, you are an image bearer of the Creator and King of all things, and that alone means that what I’ve written in months past can’t apply to you. If I’m honest, by now the memory that I have of you looks like one of those old black and white yearbook photos that someone took a Sharpie to, and for that I am sorry. I mean it. My thoughts toward you have been so counter to what I hope to impress on your heart through this letter. By God’s grace, I am working through these emotions, and I feel that I can write with a calm heart to encourage you in what you do, because you have an amazing job.
My name is Eric Brown, and my wife and I sat down in your office on the afternoon of March 21, 2012. We had just finished our 20-week ultrasound and were sent by our midwife to meet with you. The news that you delivered that day has changed our lives forever. You walked in, carrying what I’m guessing is an old medical encyclopedia, and thumbed through the yellowed pages to find where you had put your mini post-it notes. Alobar Holoprosencephaly. Those were the words we couldn’t pronounce. Never heard of it, actually. In fact, we asked you to write it down so that we could look it up online when we got home. You can now Google it and pictures of my daughter will pop up… try it. I still have to look it up to make sure I spell it right, because it didn’t even make the cut for my spell check program.
After you delivered those words and showed us the pictures, you advised us to head over right then and there to terminate her life. The phrase that is often used is “terminate the pregnancy,” but even that completely undermines her humanity. We didn’t know it at the time, but her name was Pearl, and you advised us to end Pearl’s life. Think about it for a moment… 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. Ruth and I sure did before we left the house that morning. 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.
Though I have distorted the memory of your appearance in my head, 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’ve talked with many parents who took the advice that was offered to us, and now they see Pearl and wonder what might have been. I’ve never talked with a parent who regretted choosing hope and life in spite of a poor diagnosis. To treat an unborn child as the child that “almost was” or “might have been” is a tragedy and a terrific misunderstanding.
“What? Do you guys need to see more pictures,” as if these children in your dusty old book don’t bear the image of the same Creator that you do…as if they are horrific looking, nameless statistics, and not actually someone’s children…as if someone’s appearance or productivity validates their humanity. Imagine that… these kids who are in fact beautiful, bear the same image as you do. You both reflect the image of God, and you think they look horrific.
“Well, I can’t advise that and there’s nothing else I can do for you then. I can refer you to someone else.” As if you aren’t twice my age. At the time, I was 30-years-old, sitting in a room with my wife and my unborn daughter. Nothing else you can do? Sir, there was so much more you could have done. If only you knew the power that you wielded that day. You could have delivered the same diagnosis and even used the same phrase, “not compatible with life,” and we could’ve walked out of your office with hope in our broken hearts. How do I know that? Because we spent the next 17 weeks meeting with other specialists who delivered the same diagnosis over and over again, but they spoke as if it mattered to them that my daughter had a poor chance of survival. Through often-teary eyes, they spoke with wisdom and not merely knowledge or education. They had compassion and walked us through the absolute hardest thing we’ve ever gone through. More than that, they hoped along with us. They celebrated with each ultrasound that she was still with us. They took time to be present in spite of demanding schedules. They allowed themselves to understand the weight of a prenatal diagnosis that is not compatible with life. Not you, sir. You callously brushed us off as we chose to hope against tremendous odds. We heard the diagnosis clearly, studied it ad nauseam, and decided to hope, trust, and pray, and every other doctor we met with encouraged us to do just that. You missed it. Instead, you addressed us as “kids,” and insinuated that our decision was ridiculous.
Pearl Joy Brown was born on July 27, so if you’re doing the math, you will see that today, January 27, 2013, she is 6 months old. I don’t know what newspapers you read, but I’ve often wondered if you’ve ever stumbled across one of the many articles that have been written about Pearl, and if you have, I’ve wondered if you’ve recognized our names. If I’m honest, I hope you’ve seen every last one of them. I hope you read the comments on the Huffington Post article and saw just how dark it can be inside of a heart that has no hope. I’ve hoped that you’ve seen that although we never heard God answer, “yes” to our prayers, we can clearly see that he answered “yes.” I’ve often wondered if you’ve ever looked up Ruth’s chart, or Pearl’s chart, but then I remember that especially in your field of expertise, children with not compatible with life diagnoses are a pretty regular occurrence, and though she means the world to our family, you may hear about these miracle babies all the time. If that’s true, though, you ought to have certainly encouraged us to hope.
So, yes, Alobar Holoprosencephaly is often not compatible with life, or at least not compatible with a long life, but not always. 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.”
I do not know what your spiritual beliefs are, nor do I assume that you and I share the same beliefs. But I do assume that you entered this field because you care about people, and because you want to make a difference. I don’t know that for sure, but if that is the case, then please take time to think about what I’ve said. You have a tremendous amount of knowledge, or you wouldn’t be in this position at all, and because you are in this position, you need to understand the amount of power you have. You have the power to build up or break down these families that sit in your office. You don’t have to lie to them. You can deliver the same news without delivering hopelessness. Children with special needs are a gift to the world, and their lives ought not be terminated because of statistics. Whether they ever have the opportunity to live outside the womb or not, they change everything for those that love them. Length and quality of a life have no bearing on the meaning and dignity of a life.
If you do read this, this is an honest invitation for you to come meet Pearl. I believe that if you can see her and hold her, you will understand the dimensions that we already understood when we were in your office, but you were not privy to at that time. I hope that all of this comes into focus clearly for you, and that you will be eager to wrap your arms around these families you are privileged to meet with. That may not be in your doctor job description, but it is in your human job description. Please do it well, and thank you for your time.
Husband to Ruth and father to Brennan, Abigail, and Pearl