The Value Of A Life

The Value Of A Life

Krystal L. Smith

I found myself sitting terrified in a perinatologist's office, waiting to determine if the blood screen for trisomy 18 was truly positive. After a level II ultrasound, the doctor said he did not see any markers of T18. I was offered a CVS, and opted to have it. As we chatted about the testing procedure, he pointed to the door and said, “If you look on the bulletin board in the hallway there are women on it who had a trisomy diagnosis, terminated, then had a healthy pregnancy and baby the very next try. If you wanted to be more discreet we can send you to another city. If you choose to carry, we will support you, but your baby will suffer when it is born. He will suffocate. They can give him morphine, but it will be very painful.

In medicine, I have heard it a thousand times. “I took an oath to first do no harm.” What I have found in my time spent in the hospital, is that what is ethical is extremely subjective. I have many thoughts on what the value of life is, how human beings should be treated, and ultimately the role of healthcare professionals in deciding the treatment of any person in need. My goal is to express the view point of a mother with a medically complex child on matters such as ethics, treatments, and research.

When I look back on the conversations I had with a variety of doctors during my pregnancy, I cannot remember a single time hope was offered to me. I was never told there are living trisomy 18 children. The terms used most frequently were “not compatible with life,” and “not a viable pregnancy.” I chose to carry my son to term, though I was told he would likely pass in utero. There were many days in that first trimester I wondered how I could carry on. My heart so full of love for a baby who wasn't going to be here very long. How will I do this? I promised him from the time I knew he existed, I will give you your best chance. I decided that wasn't going to change because of a diagnoses. From then on, I did everything in my power to help him. I ate well, I exercised, I took supplements and vitamins, I drank water until I would nearly float away. Anything I could do to help him, I did. As time went on, I began to have a little hope; cautious hope.

Calloway Augustus, “Gus” as we lovingly call him, had to be induced at just over 41 weeks gestation. The baby who wasn't supposed to make it to a live birth was going to be born. I had met with a team of doctors and nurses who said they would make sure my birth plan was understood and followed. They promised Gus would receive the interventions I asked for. Everything was planned. NICU was supposed to be there for his birth, everyone knew I wanted full interventions unless otherwise stated. I was assured that we would be taken care of.

December 6, 2016 a beautiful baby boy entered this world. He was born without a doctor present, without the NICU team we were promised, and ultimately lived in spite of the lack of care. We had been told he could be monitored in the delivery room to remain close to us during our prenatal care conference. All of a sudden this was not true, and we were told we could just hold him and spend time with him alone. If he turned blue, they said they could be back in 10 minutes. My family insisted they take him to the NICU since they refused to monitor him in the delivery room. Away little Gus went, crying and breathing on his own.

The care we received in the NICU was poor. While they did give him oxygen as needed and a feeding tube, they refused to do anything else. My mother and sister had done extensive research on living trisomy 18 children and knew the common problems associated with the chromosome abnormality. They knew what tests we needed and why we needed them. We were refused all testing we requested with the exception of an echocardiogram. At one point I was told by a doctor that nobody sees the economic value in trisomy children and that it is considered silly to intervene. He told me he had a child with a chromosome abnormality, and that there was no way he was going to give up his lifestyle to deal with that. He and his wife terminated the pregnancy. He told me people will be cruel, say horrible things to me, and that my marriage will crumble. He said my life would be over, and that I am a much better person that he is. While he stated he was a Christian, and his wife is a saint... I am certain he is very confused about what that means. We were sent home after two weeks and remained there about ten days before sweet Gus started having O2 desaturations to the point we had to take a helicopter ride to a children's hospital. We never retuned to the hospital I gave birth in.

Upon arrival, we were told Gus likely had a respiratory virus. With Gus's diagnosis, he knew that we wanted as much time with our son as possible and they hoped to give me that time. I looked at him and told him I know his diagnosis, and that our goal is to get well and go home. He stated it was clear that I understood what Gus has, and he will put a note for other doctors not to give me “the talk” again. He was treated for respiratory distress and recovered quickly. While we were there originally for respiratory distress and apnea, other problems were discovered and discussions about treatments and the degree of interventions began to be discussed. I was told repeatedly there was no reason to do a sleep study, that apnea was apnea, and what difference was it really going to make? I was told that a tracheostomy would not be helpful to my son because he had central apnea, and he would be vent dependent with no quality of life.

This doctor with another backing him up, went as far to tell me he hoped I would be reasonable and not do “too much.” He claimed we do too much for these kids in this country. He also stated that if he was in a car accident, he would come back to haunt his wife if she ever got him a tracheostomy and a vent. He said he told her to let him die, because he would be miserable. One of the reasons he said it would be unfair, is that my son would not be able to swim under water and I would never hear his voice again. His idea of quality of life is apparently going under water in a swimming pool. According to him, once you are trached you are always trached and nobody ever gets off of a vent. He pressed me to answer him about whether or not I would consider a trach for Gus, and I mumbled well no, I would never want to hurt him. During this time, I knew little about trachs or vents. I only had the information he wanted me to have. Unfortunately, I was only being told one extreme in a large spectrum and being fed a lie that suited this particular doctor's “ethics”. Later, because of a very special pulmonologist who has living t18 patients, we were offered the sleep study that I had desperately wanted. It was determined that Gus did not have central apnea, he in fact had the most severe case of obstructive apnea this hospital has ever seen. After doing my own research and speaking with the tracheostomy nurse, I learned children get decannulated all the time and vent weening is standard procedure. Yes it is possible you always have a trach or always need a vent, but I was told nobody ever gets rid of either. The trach nurse and I talked about what life looks like with a trach, and she explained Gus could have a great quality of life! Even if he needed a vent, it would not keep him from a great life. She explained the trisomy children are her favorite, and they definatly have a place in this world. Her view was quite different from the other two doctors who continuously told me a trach was a bad idea. As I look back, I remember thinking, isn't not being able to breathe a worse idea?

One of the repeated arguments I hear is how uneconomical it is to intervene for trisomy children when they have such a limited life expectancy. The question is often why would we do anything, go to all the trouble and spend all this money on a child who will be a vegetable. There are several points to be make in opposition to this argument. First, trying to base the value of a human life in monetary terms is absurd. Ask anyone who has lost someone they love what they would give for one more day, 5 more minutes, or one last hug. The answer is usually a simple one. “Anything.” Have you ever heard someone say, “Well, I would give 200 dollars, but any more than that would be uneconomical.”

It seems discriminatory that there are some chronic illnesses that are deemed worth treating, even if the outcome is dark, but others are deemed not worth the effort. I have always compared it to things such as cancer or cystic fibrosis. We don't just give up on giving those kids their best chance, so why is it that something like an extra chromosome devalues your right to treatments and your best chance at life?

There is a huge misconception when it comes to trisomy 18 in particular. There are living children who are thriving. They are far from the vegetables that their parents were told they would be. These children are full of personality. They smile, laugh, cry, and communicate. I am puzzled as to why these stories and the wide range of outcomes is not explained to the parents by physicians. Why are doctors not reaching out to groups such as Rare Trisomy Parents on facebook to see the wide range of trisomy outcomes and all the things these children can do. At what point will physicians start looking at the dates of the research they are reading and realize this is a different day and age. The majority of studies conducted were in the 1960's. Medicine has come a long way since then, the problem now is an ethical one.

Another argument I often hear from the medical field, is that these children are burdens to caregivers and ultimately destroy family relationships. I would argue that trisomy 18 children are some of the most loved in the world. I do not know one parent of a living or deceased trisomy 18 child who regretted their decision to carry their baby and do all they could to help them live. My child is not a burden to me or to my family. We love and cherish every moment, every single day. No one feels burdened. The biggest burden we carry is the fight for equal rights to medical care. The stress from this aspect is the most unbearable at times. Our children teach us lessons others may never know and fill our hearts with the most joy imaginable. To call them a burden is insulting.

Every child is an individual. The range of outcomes goes from mild to severe with all trisomies. Not everyone fits into one box. How can we limit interventions when we cannot say with certainty how a child will be effected? Is it not worth trying simply because there is an unknown factor? Would we do that to a child who does not have an extra chromosome? What is it that determines who lives and who dies, who gets treatment and who doesn't, who is worth the effort and who is not? A diagnosis is not a prognosis. To deny a child care, who cannot speak for themselves is unethical. Doctors have a right to deny care if they feel it is unethical to intervene, but they should refer parents to someone who will treat the child if they see it as the best option. Often people think they know what they would do if it was their child. But truth be told, you don't know until it is your child. What is the value of a life? It is invaluable. You can't put a price tag on love.