Dealing with End of Life Care Before/After Birth and Other Uncomfortable Dilemmas

With stricter abortion laws rolling out almost daily and an overwhelming amount of misinformation about the so called “Born Alive” bills making an appearance, I wanted to take a moment to address the complexities of the situations that lead to these decisions and hopefully provide a voice to those families faced with the worst dilemmas they are likely to endure. 

First, let me say that I am personally a follower of Jesus and would like to believe that I would carry a terminally ill child to term despite the massive amounts of physical, emotional, and psychological trauma that decision would necessarily create both for me and for my family, but no one can truly say what they can endure until they are faced with the reality of such a painful situation. If you have never been so unfortunate to find yourself in this tragic place, I beg you to try to empathize and also be thankful that by the mercy of God, you have been spared. 

There is a significant amount of misrepresentation about why abortions occur later in a pregnancy. According to the CDC, 91% of abortions in America occur before the end of the first trimester. 7.6% occur between 14-20 weeks, and only 1.3% occur after 21 weeks. The “Born Alive” Bill is specifically targeting those 1.3% of abortions. Let me be clear, the reason for these abortions are medical in nature- the mother did not change her mind, something tragic was diagnosed during the anatomy scan that made the child’s defect incompatible with life outside the womb. So few of us are faced with planning end of life care at birth and yet these families must. Some of these defects include babies without a brain, though it can be other defects or a constellation of defects that make surgical intervention risky and ultimately unlikely to result in survival. So, when legislators want to insist that doctors provide life saving interventions for a baby in these circumstances, they are ultimately saying the baby, already doomed to die at birth, must be artificially kept alive with tubes and needles to linger and suffer longer. This, of course, does not begin to account for the emotional distress of the parents who were already grieving the loss of a child they wanted. 

While we were spared having to make this devastating choice for our son, Liam, we were initially faced with the prospect that his heart defect was going to make surgical intervention a difficult prospect. Ultimately, we chose to continue on based on our cardiologist’s prognosis of a 90% survival rate and a good chance he would live a normal life, but not every child’s prognosis is so hopeful and loving parents are faced with the painful idea that surgical interventions may actually be less humane than palliative care or termination. 

The percentage that gets so often ignored is the 91% of abortions before 13 weeks. If you do research you will find many of these women are already mothers, even though the common misconception is these are women who are simply inconvenienced by the prospect of early motherhood. In truth, many are already mothers who are faced with the prospect of another child they cannot feed and a medical leave they cannot afford. Not to mention childcare, clothing, and diapers. These are often married women who work jobs that pay minimum-wage with no access to birth control or affordable health insurance. 

In truth, even with above average income, Logan and I are living hand to mouth each month to ensure Liam has all the therapies he needs, not to mention medicines, as well as very expensive formula since I had to wean unexpectedly. I cannot imagine what it would be like to live beneath the poverty line working a 60 hour, minimum-wage job with no health insurance coverage. Liam’s multiple hospital stays and open heart surgery costs already total more than $900k and he only just turned a year old. We still have (at least) one more open heart surgery to go. The financial burden without insurance would be catastrophic and, frankly, insurmountable.

The point is not to say abortion is moral or good, but that it has been made necessary by the carelessness of our government and its citizens (that’s me and you) to care for the living.

Even if abortions are banned as many states are trying to do, abortion will not end- it will only be relegated back to the shadows where many more will die, adding the mothers who are cornered into hard choices among the dead. The reason for this is banning abortion does not solve the underlying causes that lead women to this act. If we truly care about the unborn, we must address the circumstances that put families in these positions. Healthcare for all without pre-existing condition clauses (Liam’s CHD would be considered pre-existing condition as it was discovered prior to his birth), a living wage, and paid maternity leave would be good first steps in alleviating the financial burdens that come with parenthood. 

Something simple that has had excellent success in research studies is providing free contraception. In a study conducted by the NIH, providing free contraception reduced abortion rates by 82% Research Link. Companies such as Hobby Lobby and others that have removed contraception from their employees’ health insurance coverage should not be celebrated, but condemned. 

Banning abortion not only sets up this country for very specific human rights conundrums for women, it is also totally ineffective. If pro-lifers want to make a real difference in the futures of unborn children, it must be done in a Christ-centered, logical way. Banning abortion is just like avoiding eye contact with the homeless. Just because you can’t see them doesn’t mean they’re not there. Worse, punishing women through the justice system is the height of insanity. What these politicians are saying is, “not only are we going to make it impossible for you to have more children by denying you any coverage or care, we’re going to punish you harshly when you make the only decision you feel will keep you and your family afloat.” And pro-lifers, rather than tearing their garments in rage and mourning, applaud and fork over more money to keep these very same legislators and lobbyists thinking of and executing new ways to perpetuate this ugly cycle.

Many who identify as pro-life also identify as fiscally conservative and I get it. Our country’s lawmakers should be good stewards of our tax dollars, but our priorities as a country are horribly skewed towards military might (which is overkill at this point) alongside illogical national policies that perpetuate poverty and death within our borders. The inconvenient reality is true compassion and change comes at individual and collective cost- we must take a hard look at what we spend our money on and decide whether it actually furthers our desires or fuels the very thing we wish to see diminished. If we are not willing to consider the old ideas might actually be wrong and pay the costs necessary to correct the decades of inequality among our citizens, then we are not truly interested in protecting life, but rather legislating our morality in the most convenient and self-centered ways possible.