Loyola University Museum of Art
On Tuesday, Baby Megan was born in a hospital in Colorado.
Her parents were told months ago that she would not survive birth. They were given no hope for their daughter. Her in utero diagnosis is one of those couched in the dreaded phrase “incompatible with life.” She was expected to be stillborn or to die shortly after birth due to respiratory failure.
Yet today, Baby Megan is alive. Not only is she alive, but she is breathing on her own, and has been since the beginning. She isn’t out of the woods yet, and her challenges are great. But Baby Megan’s mother has been able to hold her in her arms. Baby Megan has been awash in the love of her parents and grandparents. It’s even possible that Baby Megan could go home sometime next week. Baby Megan’s parents were given dire predictions about her, and they were encouraged by the doctors who diagnosed her to abort. So I’m rejoicing today.
And I’m angry.
Two months ago, I published a two-part series on prenatal testing, and in part one, I talked about our friends F and S, who felt they were pressured to abort their son, who is now several months old and expected to live a completely normal life. In that post, I wrote, “…a geneticist in a laboratory won’t live your life for you when you leave his office. He may know a lot about karyotyping, disease risk factors, and life expectancy, but those things are but a small shadow of a person – just a blip on the radar of a life. Doctors don’t deserve to decide who lives and who dies – or who is allowed to be born.”
After reading it, my friend Dawn called me up.
Although she agreed with me in principle, she felt I was a bit tough on doctors. We discussed the post, prenatal testing, and abortion for awhile, and at one point she asked me if I felt that doctors really had that much power over their patients, and if they really are guilty in that many cases of pressuring parents to abort. Do doctors really have that much control?
The only evidence I have is anecdotal, of course, but I’ve known three couples – friends in real life – who’ve been pressured after a diagnosis and I’ve read the birth stories of countless others (you may be one of those who shared your own story with me). It happened to Baby Megan’s parents in Colorado. It happened to F and S in Georgia. It happened to Mr. Andi and me in Alabama. So yes, I do believe it happens and that it happens often. And don’t forget about the many families who sent their children with T21 to institutions years ago – on the recommendation of their doctor.
One day, either here or in some other medium, I plan to publicly share the story of our first child who became an angel on July 13, 1999, but today is not that day. I wrote it years ago, but have never shared it outside my immediate family. What I will say now is that when our daughter was stillborn, Mr. Andi and I chose not to hold her, see her, or even to give her a name. It wasn’t until years later that I contacted the hospital and asked for the photos they took of her that day.
And it is the Single Great Regret of My Life.
We believed what the doctors told us – that our baby would be grotesquely deformed (she wasn’t). We believed what the doctors told us – that we should get on with our lives and not dwell on what had happened (impossible). Even though we were steadfast in our pro-life beliefs, we accepted the subtle message that was impressed upon us – that because she never took a breath she was not person enough to love, not worth the pain or sacrifice we would have to endure if we embraced her.
I have made many mistakes in my life, but most of them I accept as just a part of who I am – opportunities to grow, learn, and do better. But never holding my baby in my arms is the one thing I would do over if given the chance.
So today I am angry – angry at the doctors who tried to steal the precious gift that is Baby Megan from her parents. I don’t know what the future holds for her, but I have no doubt that her parents will never, ever regret the time they spent with her, no matter how long or how short.
Andi – I wish you didn’t have regret for this. Your baby knew she was loved, heard you say “my baby”, was rocked to sleep by your heartbeat. Please don’t beat yourself up for not holding her after birth – you held her for the 9 months prior.
Sending prayers for baby Megan, strength and wisdom for her doctors, and gentle hugs for her wonderful family.
i think when someone is put in a situation like yours or mine, our instinct is to survive. so i tend to think that we hold on to what the “professionals” tell us- kind of like a life preserver. being rocked with sadness and grief, we can only handle so much and we do what we can at that particular time to make it through.
Thanks you for being a voice on this Andi. You are right to be angry. Anger is good when we direct it to positive change, as you are in raising awareness and promoting life affirming care and support for people in these situations.
You are certaintly not alone in your concerns. I know personally of many situations where parents have been encouraged to take the life of their wanted child when given a diagnosis of Down syndrome or Spina Bifida. There is much work to be done to restore medicine back to caring and upholding life for our children, it will be a real journey of healing, but one we must walk if we want equality for our community. I will walk with you Andi.
This is “friend Dawn.” That’s a title I hold very dear as I love Andi and cherish her friendship. She and I have many talks about this subject and other things and I am humbled that Andi thinks enough of my opinions to mention them on her blog. I am fully aware and have given permission to Andi to publish what I might say or ask because I know her well enough to say or ask things that you readers may not be as comfortable saying or asking. I have personal relationships with her children and her SK and my oldest son have been friends and classmates since kindergarten. I secretly hope they one day fall in love so I can have SK and the rest of those Slighs for life. Arranged marriages are making a comeback, I hear.
I will disclose that my children are not differently-abled and while I acknowledge that I will never fully understand what that is like, it does not stop me from trying to understand and be supportive. I am also in the medical field, not as a human doctor, but as a doctor to furry friends. My patients are not different from children or babies in that they cannot communicate in words. I see myself as their advocate. I want their owners to be advocates for them, too, and encourage them to research and empower themselves with knowlege so they know what I know and we can communicate on a more equal playing field. Do I make certain recommendations when there is suffering and pain? Sure. Do I force or manipulate that choice or any medical choice? No. I leave it up to the owners. They have to have peace in their decisions for their pets and I will not take that from them. I find it sad that it seems that many of my human colleagues do not offer their patients the same courtesy. When that happens, it is wrong, and I apologize for the doctors that have become so clinical and cold that they no longer see value in the lives they are supposed to help bring into the world. What happened to “do no harm?”
If the situations that Andi has described above happen on a regular basis, it is clear that we, as human patients of human doctors, MUST be prepared to arm ourselves with knowlege. We MUST be our own advocates even when we have great, compassionate doctors and especially when we don’t. We must know our rights as patients and claim them. Those rights hold power, much more power than a person who has a few extra letters in front of their name. Those letter do deserve respect, but not at the expense of our right to ask questions, to seek other opinions, and to research valid resources (not Dr. Google) for information about our or our children’s conditions. Doctors know a lot, but they are human and do not know everything. They will and do make mistakes. They are just like you and me. No different, no better. We, as patients or patient advocates, cannot be struck mute and powerless in their presence.
I’m not encouraging obnoxiousness or rudeness towards medical professionals, but frank and pointed questions are neither. If your doctor balks at your questions or reservations, find another doctor. It is your right.
Do I think all doctors encourage abortion for babies who may not be perfect? No, I do not. Do I think doctors maliciously seek out to rid the world of babies like Nathan? No. Andi does not either, but her personal experiences and the experiences of those in her circle are enough to raise her concern and cause her rightly to be shocked and angered. Do I think that some people are too scared or overwhelmed to ask questions and find themselves bullied into making decisions made under duress? Yes, I do. Do I think that some doctors take the lack of questions or concerns raised by patients (because they are in shock about diagnoses) as agreeing with what they are recommending? Yes, I do.
One of Andi’s goals, in part, is to raise awareness that abortion of “non-perfect” babies DOES happen. Too often. Another of her goals is to educate and inform. People who are educated and informed do not give their power of choice away. To anyone. Even if they have a few extra letters in front of their name. We, as parents and patients, need to claim that power and take it back.
I guess my point in this long comment is that the responsibility of health care should be shared between doctors and their patients. I am not saying that any of the stories Andi shared indicate that the parents did not ask questions or inform themselves. But just as some doctors are guilty of too easily and too quickly writing off those “non-perfects,” some patients are guilty of not asserting their rights. I salute those of you who made the choice to press on when you were told it was impossible. You are carving a path for those who will come behind you with similar choices. You are showing that while we know a whole lot about medicine, we have a God who knows so much more and proves it with Baby Megans, and Nathans, and Sarah Kates all the time. He makes the impossible possible can use ANYONE towards his holy purposes. Thank Him for that!
Thank you for your postings. At this time I have a niece who will deliver on the 22nd and they have been told there is very little hope for baby Lilly. She has Hypoplastic Left Sided Heart Syndrome. She was diagnosised at 24 weeks and the options were given her parents. They were also told that it was a very good possiblity that the baby would have downs. They laughed at that and said “wow, wouldn’t that be something. We could have two in the family.” As you know I have an adopted daughter with down’s. They have chosen to allow her to be born and take each day one at a time. The doctors have decided she does not have downs but the cardiac issues are very serious. Every child deserves a chance regardless of the medical opinions, no one but God knows what is possible. Not a day passes that my daughter does not amaze me, some things good and as she matures some are not so good but I can not imagine what life was before her or would have been without her.
I think doctors and midwives need to realise that because, generally speaking, we look up to them as experts and have placed our lives and those of our children in their care that we are trusting them to be giving us sound advice. Their’s is a huge responsibility that should not be misused. They and we need to realise that modern diagnostic methods are not perfect and that no one can predict with certainty how a particular child’s life will turn out. I have set up a Facebook page for people who are concerned about antenatal screening and prenatal testing, to give people more information and encouragement to refuse screening and/or testing. I know their are several other good facebook pages and websites that also raise concer, but I wanted one that emphasises that saying, “No!” is an option. http://www.facebook.com/pages/Say-NO-to-Antenatal-Screening-for-Down-syndrome-and-other-conditions/206989609443291?ref=tn_tnmn Thankyou, Andi, for sharing a bit of your story. I had a newborn baby who died in 1989 and I was so grateful attitudes were more enlightened than they had been in the past, so I had few regrets. I was surprised at how you were treated ten years later. Well meaning people who try to shield mothers from grief need to realise that suppressing emotion does more damage in the long run. I have a beautiful sympathy letter written by a mother who lost her premature nearly 26 years earlier. She never got to hold her baby or even attend the funeral, something she regretted. She wrote to tell me that, for her, our baby’s Mass of the Angels was also for her baby and that for the first time in 26 years she had the opportunity to mourn her daughter and had been able to cry. My daughter’s funeral was 24 years ago and reading this mother’s letter still leaves me in tears.
Thanks, Stella. I have nothing to add to your great comment. Pain can’t be waved away with a magic wand (or a scalpel).
I have just posted an album of photos of my daughter at the facebook link above. It includes a readable photo jpeg of the letter I mentioned. The woman who wrote it died several years ago.
Wow, Stella. That was both beautiful and heartbreaking. It’s so sad that “professionals” dispense advice (under the guise of compassion) that, when followed, causes so much pain for so long.