Editor’s note. The following powerful story appeared in the newsletter of New York State Right to Life, NRLC’s state affiliate.
Those who attended Lobby for Life Day heard Nora Flores, RN, share the powerful story of her son, Alexander – “the Great” as they like to call him – who had Trisomy 13. Although he only lived for eight weeks after birth, his parents cherished every moment of his short life, offering an amazing example of selfless love for their son.
In past newsletters, we’ve shared some details about Alexander’s story, but we’d like to offer more from the personal account Nora shared for those who could not be at Lobby for Life Day.
In 2013, Nora and her husband, who live in New York State’s Capital Region, were ecstatic to learn they were expecting their first child.
At a routine 18-week ultrasound, doctors noticed some abnormalities and suggested an amniocentesis test to confirm a diagnosis quickly so an abortion could be easily scheduled. The Floreses were not interested in an abortion, no matter the diagnosis, and were concerned about the risk of miscarriage posed by an amniocentesis. However, local fetal-maternal specialists refused to see them unless they agreed to the procedure.
Seeing it as their only way to access possibly essential treatment, they consented to the test. Just before their appointment to receive the results, however, Nora received a call from the local hospital to confirm her “procedure” the following day.
Shocked, Nora told the doctor of this unexpected call. He explained that he had scheduled an abortion for them, as “termination” becomes more difficult later on, and the test had confirmed that their baby had Trisomy 13. They were told this condition was “incompatible with life:” their son would die. Abortion was their only option.
Since they rejected abortion out of hand, they returned home with no care plan, no resources, and no referrals.
They began researching on their own. They found that some children with Trisomy 13 do, in fact, survive delivery and live weeks, months, or even years. They learned that proper prenatal monitoring could help give their child the best chance possible. There was no way of knowing how long their son would live, but they were determined to love and care for him each day they were given together.
They received affirmation in their decision from Alexander himself:
“He told us as much as anyone not to give up. Many times when someone would start to speak grimly of his outcomes he would deliver quite the kick or punch to mommy as a reminder that he was tougher than any diagnosis.”
Fortunately, both of Alexander’s parents have backgrounds in healthcare, which they found invaluable for securing Alexander the care he needed. Of course, not all families have this advantage.
“I shudder to think of the families who do not have this knowledge and ability and the terrible choices they must face without any support.”
As the Floreses sought out other providers beyond the local region, they found a wonderful prenatal and delivery team in Boston. On January 10, 2014, Alexander Wyatt Flores was born. His known complications were less severe than expected and he was able to go home after just two weeks in the NICU.
Nora said caring for Alexander, “was the most rewarding and soul-nourishing thing I have ever done and ever will do, to care for this person that very few believed would even live let alone be home and fussing because he did not like his diaper changed.”
Meanwhile, they encountered medical professionals who were disinclined to provide Alexander with routine care. One kidney specialist resisted the prospect of long-term treatment and asked the Floreses, “How long do you expect him to live anyway?”
“Our response was the same we had given several times already – we didn’t know how long he might live. . . . We will proceed to treat him and expect the same level of care that any other baby would receive. . . .This would become our battle cry as things quickly deteriorated over the next few weeks. . . . I had no idea at that time how many other families have said some variation of those words many times to many providers.”
Life continued with Alexander, who especially loved his pacifier, his Blue Dino, and certain colors and music. He had preferences for certain bands and even singers.
After a few weeks, the Floreses brought Alexander to the ER due to an accelerated heart rate. It quickly became clear that he was beginning to experience cardiac distress. However, hospital staff refused to call a cardiac specialist, claiming it was not protocol to do so at night. Alexander’s parents later had a staff member confirm that they would have called a specialist for a “normal” baby. Staff was more interested in connecting the Floreses with palliative care – although this should not have been a life-threatening event, at least not if it had been treated in a timely manner.
Care eventually came with scheduled morning rounds, and although it was agreed that Alexander was in distress and urgently needed medication, no efforts were made to expedite the process.
At this point Alexander hadn’t eaten for 24 hours. The Floreses were told they could not feed him for fear of aspiration. Based on their clinical experience, they knew that was not a true concern, particularly since Alexander had a feeding tube that would circumvent aspiration issues. They were forced to literally beg the staff to be allowed to feed their hungry son. When a doctor finally agreed, Nora reflected, “It was as if she was doing us a favor rather than showing any compassion towards us or our baby.”
Again receiving nourishment, Alexander’s heart rate stabilized over the next day and he soon was able to return home, although he now required an oxygen monitor. The hospital never followed up with the Floreses, although a full investigation into the inadequate response Alexander’s condition merited was promised upon discharge.
Alexander did well at home, aside from a few scares. He continued to enjoy his favorite songs and being in his parents’ arms.
Although the Floreses learned to avoid the hospital where possible, at one point a sudden change in Alexander’s breathing forced them to take him back to the ER. His condition worsened.
The Floreses made the heartbreaking decision not to pursue aggressive treatment, which was unlikely to help Alexander at this point, and use the time they had left with him to hold him and ensure his basic needs were met. He passed away at eight weeks and one day old.
“He never knew a moment where he did not have one or both of us there loving him, holding him, comforting him, keeping him warm and safe. . . . We mourn his passing and ache beyond words to touch him once again but never regret bringing this beautiful baby into the world.”
The Floreses are committed to sharing the story of “Alexander the Great,” in hopes that other families met with a difficult diagnosis can enjoy the time they are given together, free from pressure to hasten the death of their loved ones.
May Alexander’s legacy and the beautiful witness of his parents’ selfless love inspire many others to see the dignity in every human life.