Asher’s Story
This is a piece about women’s rights, human rights, compassion, love, and grief. And this is our story, and unfortunately the story of many others like us.
Eight months ago, my wife, Sami, and I lost our son, Asher. At our 20-week anatomy scan, the right pulmonary artery connecting the heart to the right lung was not visible. A follow up fetal echocardiogram confirmed the suspicion: not only was the artery missing, but the right lung was as well. This set off a series of events for us, visiting and specialists up and down the east coast, from New York, to Boston, to Philadelphia – all to determine what our son’s prognosis was. Could he live? Could he survive with this condition? If he could, what would his life look like?
The first diagnosis – pulmonary agenesis, or pulmonary hypoplasia – we learned was not fatal, but with a caveat: other conditions could be present that would make it fatal. We had hope, but we needed to rule out other diagnoses. The subsequent MRI we had was inconclusive, but the doctor had suspicions: our son’s stomach was small, his swallowing was not able to be observed during the procedure, and there was an anomalous artery connecting to the heart. The recommendation was to go to Children’s Hospital of Philadelphia for a second opinion, using their superior imaging capabilities.
Our visit to CHOP sadly confirmed all suspicions. The right lung had indeed not developed. The anomalous artery attaching to the heart was diagnosed as Scimitar Syndrome, a rare condition that may require risky surgery after delivery. The small stomach and swallowing issues were related to a fusion between our son’s trachea and esophagus, called a tracheoesophageal fistula (a “TEF”), which among other things would mean: our son would not be able to breathe on his own and our son would not be able to eat on his own.
He would likely not survive birth, and if he did, his life would consist of constant surgeries for the first 3 years of his life. If everything in those procedures were successful, he would still likely not live past 5, and he would never leave the hospital.
We initially thought the lung diagnosis was bad, but the TEF was undoubtedly worse – and together, they were untenable and incompatible with life. TEFs are usually not able to be diagnosed in utero, but our baby’s gestational age (almost 24 weeks at that point) and CHOP’s expertise in imaging made it easier to see. Our radiologist told us it was “the most confident diagnosis of a TEF in her career”. We were crushed.
There is no worse feeling as a parent than having exhausted every option for your child to thrive, grow, and live a happy and healthy life. We were facing a best-case scenario of a son who would only know pain and suffering, who would never get to see the world outside of a hospital even in an optimal scenario. In the most difficult decision I hope that we ever have to make, we chose to terminate for medical reasons (TFMR). We grieve our son and this decision every day, but never for a moment do I doubt that we made the right call. Most importantly, we had a choice, a right and a privilege that will soon be unavailable to millions of women and parents in this country based on where they live.
Given the gestational age of our son, Sami had to go through a full labor and delivery. We were in the hospital for three days waiting to both meet him and say goodbye. I am grateful that we had the opportunity to hold him, to sing to him, but I also yearn to go back to that moment in time. This baby could not have been more wanted or more loved, but still, we knew that we had to go home with empty arms. We were fortunate to have that time with him, however brief. We were fortunate to be able to deliver him in a safe environment.
There are many other parents that share similar stories to ours – in our search for answers and in our search for support, we have met many of them. We were fortunate to have the access to the care that we needed, and that it was all covered by insurance. From routine imaging, to the fetal echocardiogram, to the first MRI, to consultations with doctors at Boston Children’s, to consultations with doctors and further imaging at CHOP, to a three day hospital stay at Mt. Sinai in NY – everything was covered. Many of the new laws poised to go into effect after the Supreme Court ruling would make our situation the exception, and not the norm, for women and families across the country. Many families would face indelible economic hardship and financial repression from these laws and the draft Supreme Court ruling.
Beyond the economic hardships, women will endure physical hardships, and all parents will be subjected to emotional hardships if they find themselves in similar situations to ours. Sami would have been forced to carry to term, despite the fact that she herself would have been physically at risk should the pregnancy have continued and gone to a full-term birth, all despite the fact that in every realistic situation our son would not have survived.
She (and I) would have borne the emotional toll every day until he was born, knowing the inevitable was coming – and should he have miraculously survived the birthing process, we would have watched him suffer every day, only staying alive through a network of tubes and machinery in between life-threatening procedures. These proposed laws resulting from the Supreme Court’s overturning of the law of the land would have forced our son to suffer until the day he inevitably died from the conditions we were aware of before he was born.
As Jews, it is the law of our religion to “choose life”, which according to our scriptures means to choose the life of the mother over the life of an unborn child in a situation like ours. The Supreme Court’s draft ruling would allow for laws that suppress our ability to practice our religion and religious freedom, a core, fundamental tenet that this country was founded upon.
We know that everyone does not / will not agree with our decision. We know that others in our position may have chosen a different path. We can agree to disagree, and this is fine – we respect everyone’s right to choose. The issue now clearly in the forefront is the pending lack of choice for millions of women and families in this country. It is the issue of states and governmental institutions hiding behind religious ideals to suppress the choices of others, instead of recognizing that diversity of people, beliefs, and points of view are what made this country great in the first place. Freedom is not freedom if it is built on the suppression and oppression of others.
Our decision was one that came from the deepest love a parent can have for a child. I search for ways to honor Asher and his memory every day, and I am grateful that he never knew suffering, only the love that Sami and I had for him.
My sincere hope is that most people reading this never know the pain of a decision like ours. For others currently in our situation, those that may be one day, and any parents facing a situation that may require this choice: know that I support you and your right to make this choice on your own. I know you’ll make the decision that is right for you.
~Ari and Sami Mazo
