Dear Dr. H,
Hi, it’s me Brittany Feinauer. You may not remember me, but let’s be real.. you probably do. I have been writing this letter in my head for the past 365 days and though you will likely never read these words, I have a few personal items of business to take care of. Exactly one year ago on January 24, 2014, I walked into your office for an 18 week routine pregnancy visit and was immediately referred to a high risk facility because of an alarmingly low fetal heart rate.
“You’re baby is very sick.”
“It is unlikely that she will live through this week.”
“You can choose to induce labor now or wait it out.”
Of course I don’t blame you for the ANA antibodies that attacked my baby’s heart. I don’t blame you for not catching it sooner or being able to intervene. I have certainly been blindsided by tsunami sized waves of anger while treading through the five so called stages of grief, but I am not writing these words out of anger today. I am writing them mostly out of a cathartic yearning for closure and validation, but also because from my current vantage point, I can more easily see what aspects of my doctor/ patient experience were sorely lacking. And even though I was not emotionally strong enough to advocate my own needs this time last year, hindsight is 20/20, so I suppose I am making up for lost time.
Although the traumatic details of my infant loss experience were statistically anomalous (probably not even worthy of the obligatory asterisk in a “things that could go wrong, but probably won’t” section of a pregnancy textbook) the sobering truth is that 1 in 4 women experience some form of infant loss. Unfortunately this is not a new or minor problem, but it can sometimes seem that way because of the social stigma associated with openly talking about stillbirth and other forms of loss. As the 1 in 4, I am speaking up now because I am still standing and I’m here to tell you the good and bad news regarding your chosen career path as a fairly new OBGYN. The bad news is that you will have future patients dealing with miscarriage and stillbirth. I was not an isolated once in a life time deal. The good news is, you have the opportunity to make a world of difference in those women’s lives and I’m here to tell you how.
First and foremost, you should have referred me to Angel Watch, Share Parents of Utah, or any number of other infant loss support groups. Anticipatory grief is a paralyzing task to navigate for the first time on your own. The fact that you claimed you had never heard of any of these organizations until 5 1/2 weeks after my baby’s fatal prognosis is frankly unacceptable. I was not in a position to leave my house most days let alone seek out help for myself. You could have made a huge difference by referring Angel Watch’s in home services and counseling to me as a preparation for my baby’s birth/death. Luckily an apologetic nurse asked me if I wanted her to give my name to Angel Watch after my first scheduled admittance to the hospital for advised induction only to be sent home 45 minutes later due to a paperwork mistake… which brings me to my next item of business.
Clearly you felt horrible about your oversight of the legal details of medically advised pregnancy termination in the state of Utah, but even before you had me blindly sign the outdated paperwork, the root problem was that I was completely unprepared for the reality of those legal documents at all. Two weeks prior when we had sat in your office and you explained to me why you were encouraging me to not carry the baby past 24 weeks gestation, you never once mentioned the word termination or abortion.
It’s all fine and good that my official medical record states that I was checked into the hospital for “termination of pregnancy secondary to fetal congenital complete heart block, incompatible with life and recommended termination by maternal fetal medicine,” but for the rest of my life I will have to live with the fact that I terminated a pregnancy. Even though my decision was largely based on your advice, it was my signature on that termination document – not yours. I trusted you to provide me with the information I needed to make an informed decision and felt completely betrayed when the nurse brought in those consent forms. The fact that you were unaware of the updated forms with a mandatory 72 hour waiting period was akin to sprinkling salt in my freshly cut wound. Unfortunately this minor detail you overlooked has complicated my grieving process ten fold and planted a deep seed of mistrust in every medical professional I have encountered since.
I totally understand that you were young and inexperienced, but you probably should have referred me to a specific doctor I could have called or seen while you were on your honeymoon for 2 weeks during the scariest days of my life. Being told to “call the hospital” if I stopped feeling movement from the baby was probably the least comforting advice I could have received during those dark weeks of anxious waiting.
It was also extremely disconcerting having a random doctor call me and say, “Dr. H is out of town and asked me to call you to let you know that your blood work results are in and it looks like you have tested positive for lupus antibodies which explains the congenital heart block in your fetus…so at this point a postmortem autopsy is optional.”
Gee thanks, kind stranger.
After spending approximately 24 hours reading everything I could on Lupus (after naturally ruling out the concern that it was a magic Harry Potter spell instead of a human ailment) it was quite devastating to believe that in addition to my baby’s failing heart, I had lupus. This was actually 100% untrue and not explained to me until one week after my delivery when my rheumatologist informed me for the first time what was actually going on inside my body.
Just to further clarify for you (something that as the doctor you probably should have clarified for me): A positive ANA (auto nuclear antibody) blood test result does not correlate with a diagnosis of Lupus. As such, referring to the results as “lupus antibodies” is extremely misleading to a person who has never heard of any of these terms. A quick scroll through Wikipedia’s Systematic Lupus Erthematosis (SLE) page assures the concerned and literate layperson (that would be me) that although Anti-dsDNA antibodies are highly specific to SLE and found in 70% of Lupus patients while appearing in only .5% of healthy individuals, simple ANA screening (which is what I had done) yields positive results in many connective tissue disorders and other autoimmune diseases, and here’s the kicker… MAY APPEAR IN NORMAL INDIVIDUALS (again, that would be me.)
Maybe you already knew all of this information. If so, you could have saved me a Titanic sized boat load of worry by sharing some of this with me before you left on your honeymoon. Just FYI. Also, the specific type of ANA I have is SS-A which in isolation often amounts to a heaping pile of asymptomatic nothingness, but predisposes me to a less severe autoimmune disease called Sjögren’s syndrome (which definitely rolls off the tongue more like a hip swedish band than a rare disease, but in this case is anything but melodic.) In layman’s terms, Sjögren’s is characterized by dry eyes and dry mouth.
In a strange way, I wish I was kidding about this.
For a month and a half I carried a baby who was incompatible with life. When I wasn’t completely consumed by this fact, I was mistakenly preparing for a new future of potentially fatal pregnancies, fever, malaise, joint pains, myalgias, fatigue, possible temporary loss of cognitive abilities, and a life sustained by immunosuppression drugs. That portion of my anxiety could have been prevented entirely by a doctor who took the time to explain the facts to me. (That would have been you.)
The truth is: the likelihood of an isolated SS-A blood result causing 3rd degree heart block in the 18th week of my first pregnancy was about 2%. (TWO PERCENT!!) In other words, it pretty much never happens. Only it did. To me. When you factor in the legal oversights and medical complications that occurred, it’s safe to say that my situation was a cruel and disgusting joke of ill-timed fate. The rarity and randomness of my circumstance was not explained to me until one week after my delivery. At that time, I was also told that although I accidentally joined an exclusive 2% club, after one failed pregnancy the chances of stillbirth in a subsequent pregnancy jump to 15-20%. I am currently on a medication that is supposedly coaxing those numbers down a bit, but I’ve had to accept that the innocence and excitement of pregnancy will never be within my reach again.
Now, let’s talk about those 5 weeks leading up to my labor and delivery in which I had weekly appointments just to check for a heartbeat. You had to have understood that those visits were extremely difficult for me to come to. By this time I was showing and sitting in a waiting room with other excited expectant mothers. It was like nails on a chalkboard listening to their innocent banter. The least you could have done is explained my unique situation to your nursing staff who saw my baby bump and assumed that I was having a normal happy pregnancy like every other woman that strolled (or waddled) through that clinic on any given day. Innocent questions about whether I had picked out a name or if I was having weird cravings while getting my blood pressure checked were completely avoidable. The look on the nurse’s face when I finally told her what was actually going on was pure humiliation. You could have saved us both a lot of trouble and discomfort by communicating to her why I was coming in for those weekly appointments. I know you were busy, but it would have taken all of 45 seconds to explain.
Lastly, let’s talk about my 3 week post partum visit. First of all, bumping the standard 6 week visit up to 3 weeks is understandable because you were moving, but from where I’m standing now I am shocked and appalled that you didn’t refer me to a specific OBGYN to continue to follow up with after you left. It had only been three weeks since I had resentfully expelled my precious 2 lb baby along with about 25% of the blood in my body, so to ask “how I was doing” seemed a little flippant.
You asked if I ever got outside or did anything productive and I now understand that those were probably standard questions you were trained to ask in trying to gage my overall emotional/psychological state, but let me tell you something. I was still in a state of total shock and hadn’t had time to process much of anything yet. My BMI was 17 and I couldn’t even walk around the block without having back spasms and bleeding.
I truthfully told you that I slept most days and jolted awake from PTSD like nightmares at night. Instead of casually suggesting that I seek out a grief counselor, you should have given me specific referrals and then followed up with me. I’m sure you meant well when you doubled the dosage of my off-brand Zoloft prescription and confidently said, “There, now that should take care of those pesky nightmares.” Guess what? It didn’t. You wished me luck and swiftly moved to Texas, but for the sake of any muted ability I had left to feel much of anything, you should have talked to me about the pros and cons of antidepressants. You should have explained to me the dangers of stopping cold turkey, who to call if I had questions, explained the possible side effects, and told me how to start the tapering process when I was ready.
It has been a long and bumpy year for me, but I eventually got the help I needed mostly on my own through trial and error. I’m very pleased to tell you that one year later, my weight and overall health is stable, I am medication free, I have a job that I love, and I’m very hopeful about the future. I hope things are going well for you in Texas.