When I was 19 weeks pregnant, an ultrasound of my baby revealed markers for a condition called trisomy 18. We were offered amniocentesis, which we refused because we didn’t want to risk hurting our baby. We were told we would have more choices if we knew for sure. We said we would never abort our baby, but would love him no matter what he had. We named him Peter. We were told there were no survivors beyond 2 weeks with trisomy 18 and that most people aborted babies like this.
At 33 weeks I had an emergency c-section. Peter weighed 3lbs and 2oz. Peter was given excellent care until day 2 of his life when a FISH-metaphase test revealed he did have trisomy 18. At that time it was recommended to us that we stop all treatment, wrap him up in a blanket and let him die. We were told he would lead a life of terrible pain and suffering and would never know us or respond to us. My daughter went on the internet and found many children living with this, some in their twenties and thirties. When I asked the doctor why he had lied to me, he said, “Well, how these children do largely depends on the choices their parents make for them.” I responded,” How can parents make decisions when they don’t receive accurate information?” He then said, “Well, we have to think about resources and you know Peter will never be able to contribute to society and will be a horrible burden to your family.” I started to cry, because I knew resources meant money and it hurt so badly to have a doctor tell me my son wasn’t worthy of the needed treatment to help him live.
Another woman doctor, whom I had never met until after Peter was born, came into my hospital room and said she wanted to talk to me as a mother, not as a doctor. She said that if I wanted to be a good mother to my other children, I had to let Peter go because he would be a burden to our whole family and it would not be fair to them. I could do nothing but cry.
We were told our son’s heart defect was fatal. Something told me the doctor was not telling the truth, so we made our own appointment with a pediatric cardiologist who shook his head and said Peter’s heart was stable and functional, but he did need a minor surgery called a PDA ligation. The doctor at the hospital told us that Peter was not a candidate for this surgery that was described to us as open-heart surgery. We were asked why we would want to put our son through that. It was not open heart surgery but a minor procedure to close a blood vessel.
This is just a small example of the incomplete, inaccurate information and outright lies we received. We were pressured over and over to sign a DNR. We were even told we could not receive home care visits from a nurse unless we signed a DNR. I called the director of the home care nursing program and asked her if this was true. She was flabbergasted and told us this was not their policy, nor had it ever been their policy. When I confronted the doctor about that she said, “Well they must have changed their policy.” To which I responded, “No, it has never been their policy.”
We were very concerned about our son’s welfare. It was very hard leaving him at the hospital knowing they felt as they did. We called the head doctor of the NICU at the U of M for a second opinion and shared our concerns. When the doctor at the hospital Peter was staying at found out, she was very angry. The next day she said we had two choices: we could take Peter home or we could transfer him to Children’s Hospital. She had already called and they had a bed ready for him. She said we had to leave HER hospital.
We decided to take Peter home. He only weighed 3lbs 11oz. He thrived on all the love and attention and grew and did many things we were told he would never do, like drink from a bottle and eat by mouth. He knew us and loved us, and we loved him. He was the happiest, sweetest little boy, who was everyone’s favorite. He was never, ever a burden, only a joy and a blessing. He made us all better and taught us so much about love and compassion for others. He was the best of us. He brought our family tremendous joy.
Peter died at the hospital at the age of 6 ½ under very questionable circumstances. He died the day after having his appendix removed. We were told at the time of his death that he died because of infection from appendicitis and that his heart just couldn’t take it. We had watched his stomach getting bigger and had asked if he could be bleeding. The doctor ordered an ultrasound, which he did himself. He told us all he saw was air. A short time later, Peter was dead.
We knew something was terribly wrong, but didn’t know what. We had an independent autopsy done. The doctor who did the autopsy said Peter bled to death. He had almost a liter of blood in his abdomen. There was no infection and his heart was not why he died. When we received all of Peter’s medical records, we looked for the scan of the ultrasound. There was no scan, only a report from the doctor who did the test saying there was air in Peter’s abdomen. We discovered later that the hospital Peter died at had an internal futility of care policy that the public does not know about.
In England right now tens of thousands of patients with terminal illnesses are placed on a “death pathway” to help end their lives. In a letter to The Daily Telegraph, six doctors warned that hospitals may be using the controversial scheme to reduce strain on hospital resources. Last year The Daily Telegraphreported that the numbers being put on the pathway had doubled in just two years, with tens of thousands of patients now involved. But up to half of families are not being informed of clinicians’ decision to put a relative on the pathway, the report by the Royal College of Physicians found.
Hospitals around the United States – nobody knows how many – have been quietly promulgating internal futility of care policies. I was reading an article1written in 2006 by Wesley Smith, a bioethicist, about futility of care. He wrote:
If the principle is ever established that doctors, hospitals, and faceless ethics committees can dictate who can live and who must die, the already weakening faith of the American people in their health-care system will be seriously undermined and the door will be thrown wide-open to medical decision-making based on discriminatory hierarchies of human worth. [Emphasis added.] As German physician Christoph Wilhelm Hufeland wrote presciently in 1806, “It is not up to [the doctor]whether . . . life is happy or unhappy, worthwhile or not, and should he incorporate these perspectives into his trade . . . the doctor could well become the most dangerous person in the state.”
Was my beloved son Peter a victim of the hospital’s internal futility of care policy? Did someone make a decision to let him bleed to death based on a “discriminatory hierarchy of human worth?” Was his life deemed not worthy of the most basic treatment because he was a little boy with a disability who, in some minds, would never be able to contribute to society?
On the one-year anniversary of his death, his 10 siblings, 13 nieces and nephews, other family, and five Catholic priests got together to celebrate Peter’s life and remember all he did for all of us. Every person there and many more could tell you how this sweet little boy contributed. He made his family and all of those who knew him better people. That’s what these precious kids with disabilities like Down syndrome or trisomy18 do for us. Over 90% of these kids are aborted and will never have the chance to experience the love of their families and help us be more compassionate, loving people. Peter was pure love.
These kids are teachers of our souls and the world needs all the blessings they bring us. No one should have the right to make treatment decisions about anyone based on policies that the patient and family aren’t even aware of. Our family has to live with the pain of how Peter died, knowing very likely it didn’t have to be like it was. We will always consider him our greatest gift besides our faith.