It’s a narrative I have addressed indirectly here, and sometimes, in careful discussion, directly with others: the close tie that congenital heart defects have with abortion; the tragic reality that a large number of babies diagnosed with CHD in-utero are “terminated for medical reasons” due to their imperfect hearts. And today, it looked me square in the eye. Following the recent political discussion (relating to the Presidential Debates), a New York Time Opinions article was trending among Pro-Lifers and Pro-Choicers alike.
You can read that piece here: Late-Term Abortion Was the Right Choice for Me
This opinion is nothing new. It is one I have encountered from the first days after receiving Walter’s diagnosis – from my Maternal Fetal Specialist, from chat rooms, and from any quick google search of Tetralogy of Fallot with Pulmonary Atresia (the above article refers to a baby likely diagnosed with Hypoplastic Left Heart Syndrome, often in the form of a single ventricle, and one we have encountered frequently in our “heart community” of friends).
These various “termination” stories are often so “powerful” because they reject the Pro-Life narrative that aborted babies are unwanted from the beginning. Though a human heart is formed between weeks 5 – 6 of pregnancy, defects are often not noticeable, or not examined until the standard 20 week anatomy scan, meaning at this time a mother is often visibly pregnant, has felt her child move, and may already have had a baby shower, or decorated the nursery. In many cases, these families name their baby, have post mortem photos taken together, and hold a memorial service. I pray for these women, because they acted out of what they thought was mercy for their child, because they trusted the medical providers who made them feel that a life with an imperfect heart (needing painful open heart surgeries and the uncertainty of transplants) is not a life worth living, because our society and culture has told them that an imperfect life is a valueless one, and because women (as well as their unborn children) have been let down by a country that will fight to not simply permit abortion, but celebrate it.
My position among many of my friends and some extended family is not a popular one. But legality, and right, aside, let us at least discuss this “choice” given to women in the wake of these diagnoses, and quite possibly, we may have something to agree on.
First, I’d like you to step into my shoes for a moment: twenty-two years old, newly married, and pregnant with my first child. I had also just moved to a new state, far away from family, to support my husband in his career as a Marine – a duty which keeps him away from home 50%-75% of the time. I had started a new job with great pay, good benefits, and was part of a fast track program to high level management positions within a Fortune 500 company (a job where I would eventually use all of my sick time and vacation going to doctor’s appointments, begin my FMLA early, and later resign, unable to keep up with the demands of work, and the extensive prenatal care we needed for our son). My situation was never desperate: it was happy, beautiful, and full of life’s challenges, but given the news we would soon be given about Walter’s heart, many would not fault me for taking “mercy” on my child and ending his life prior to his birth.
The narrative I have shared here regarding Walter’s diagnosis has always been a hopeful one: one where Dan and I had everything together and expert doctors were planning to save Walter’s life. But, there has always been so much more to that story. The parts where the maternal fetal specialist handed me a box of tissues and said things didn’t look good – that our son may not survive birth – and if he did – would have a tragic life. Where “termination” was brought up multiple times during the appointment, but no mentions of adoption ever discussed (all before even meeting with a fetal cardiologist who makes her life work caring for children with CHD and gave us the hope we craved). When I slept on the floor of Walter’s already painted and decorated nursery for a week, believing in my heart that Walter would never come home to enjoy it. When my strong, steady, husband’s eyes welled up and his voice shook when he said “brain and heart anomalies”. When my husband was quietly asked to leave the room so that I could sign consents acknowledging that I had been advised of (and declined) my abortive rights in the state of Virginia.
I am grateful that I have a husband (and family, and faith) who valued life of the unborn prior to ever learning about Walter. I am grateful that Dan and I discussed prior to even getting married (let alone pregnant), that regardless of what any prenatal testing showed in any child we had, we would do everything in our power to help that child live, and in the very least, be born. The cruel reality is that Walter’s heart was made to fail, and that it is only by the miracle of modern medicine that he had a chance to live beyond a few months old.
But I also know that many women do not have this support system, information, and resources. In one of their most desperate and vulnerable moments they turn to their doctors who greatly favor termination over palliative care (as there is, of course, no cure for CHD). They turn to doctors who give no information about adopting out a child with complex medical needs to a family prepared to handle them. They turn to doctors who refer them to cardiac specialists only after rejecting termination as an option. When I was handed information on ToF w/ PA, there was a simple medical description of the diagnosis describing the four part defect (five including the Pulmonary Atresia), and a notice of my abortive rights in the state of Virginia. No adoption pamphlets, no CHD support group information, no contacts of local parents raising a child with CHD who may be able to provide some answers….no hope. We were given some resources similar to these through the Children’s Hospital in DC after deciding to not terminate Walter’s life. Even then, I was not introduced to our “LA Heart Moms Group” until Walter was already in the middle of his first open heart surgery, by another “Heart Mom” who approached me in the waiting room. It was my own research (hours upon hours of it) where I found personal stories, alternative treatments, research studies, medical journals, and so on. These were not handed to me with the same gravity and authority as the termination notice from my doctor.
Later, after Walter’s birth, we learned of a local family who chose to terminate their child with ToF, and our hearts broke. I contacted our Navy OBGYN clinic to see if perhaps, I could provide them with contact information for our LA Heart Mom Group, so that women given a CHD diagnosis in the future could speak with women who had been in a similar situation. I also asked if the clinic worked with any adoption agencies to offer their services to women considering termination. I was given a firm “no” and “no”. This reality is true across the medical field: they are bound by strict laws and regulations prohibiting “advocating” this kind of information to their patients. After having difficulty conceiving our second child, I quickly began looking into adoption, finding that no networks existed with the purpose of putting women carrying babies with various defects (like CHD) in contact with families specifically looking to adopt children with a certain disability. Yes, adoption agencies and the foster system exist, but there is nothing as specific or as helpful as what I was looking for, and none of them are allowed to be presented by medical professions to women given these diagnoses. (Of course, a discussion of adoption, its hurdles and expenses is an entirely separate and tragic discussion on its own).
What this all leads me to ask is, “what kind of ‘choice’ is this?” What options and support are we truly providing mothers in a system where terminating a child with birth defects is the primary objective of the medical community? I can only imagine the uproar were the situation reversed. In our society’s attempt to make sure a woman’s right to abortion is protected, we have dismissed her right to fight for her child.
If the Left is earnest about their respect for a mother’s choice, if they look at a room of toddlers and see Walter’s life just as equal and valuable as the others, despite his critical life-threatening heart defect, then we can agree that medical practitioners should be legally required to provide alternative options to abortion as equal and valuable as termination. As it stands, when I look at my energetic, curious, and thriving son, I know that he grows up in a world where about half the people he meets would not find his pre-birth execution horrific, but understandable. Personally, I would at least like to know that mothers given the same choice I was had more opportunities to see and meet children like our Walter, and just maybe, see more of them thrive, laugh, and love, too.
*I would like to disclose here that as this is my personal blog, any unfriendly or hateful comments towards either myself/other commenters will be promptly deleted. I absolutely respect your right to an opinion, but similarly respect my right to civil discourse in my own space 🙂
Daughter of Time 