Every life has value, right? What about those who don’t appear able to value their own lives? What about infants whose brief existence is filled with suffering? Can we say that God has a purpose even for them?
Guests appearing in the episode:
Dr. Erica Salter
Erica K. Salter, PhD is an Associate Professor of Health Care Ethics and Pediatrics and the director of the PhD program in Health Care Ethics at Saint Louis University and the vice chair of the Ethics Committee at Cardinal Glennon Children's Hospital. Her research uncovers and examines the assumptions underlying current dominant concepts in clinical ethics, especially pediatric clinical ethics and clinical ethics consultation with the aim of improving health care decision-making for patients, families and providers. She lives in St. Louis, MO with her husband, Jake, and two kids, Jonah (6) and Leo (3).
Transcript
I want to tell you a love story. I want to tell you this story, but I'm afraid you'll stop listening. Like all love stories that are heart wrenchingly beautiful. It has its share of heartache. But please listen to the heartache because that's all it takes us. Listening to one another's stories. Allowing ourselves to be transformed and then. It isn't just heartache anymore. It becomes something more. Kiara and Enrico met on pilgrimage to Medjugorje, the site of a Marian apparition, in 2002. It wasn't an approved site then, but it is now. As of last year, in 2019, when Pope Francis gave it the thumbs up and they fell in love. And unlike most stories we hear, it's not the falling in love that's remarkable. It's what came next. Six years later, they found themselves making another pilgrimage, this time to Assisi. It was there that they became engaged, and a month later they were married. A month after that, Kiara was starting a postgraduate degree in political science when the couple discovered they were having a baby after their first ultrasound. Though, the couple didn't walk away with fuzzy black and white photo to show loved ones and fawn over imagined family resemblances. Instead, they discovered that the baby had anencephaly, a condition in which much of the brain remains undeveloped. For babies like this, life after birth, if they make it that far, is measured in hours, not in years. Despite immense pressure from physicians to abort, Kiara carried her daughter to term. Maria was born and lived half an hour. Long enough to be baptized long enough to be held in her parents arms before she passed away. Ultrasounds of Kiara's next pregnancy revealed his son's divide, who was formed with no lower limbs, no kidneys. Like his older sister, the prognosis wasn't good. He too was baptized and held close during the 38 minutes of his life. We might hear this and be able to think only of the tragedy. We might never be able to see the beauty of these lives as their parents did. But after these experiences, Kiara and Enrico. They spoke out. God gave us 2 special children, Kiara said. But he asked us to accompany them only until birth. He allowed us to hold them, baptize them, and return them to the hands of the father. There was a peace and joy that was unlike anything else we had experienced. We don't hear stories like this. And when we do, it's so tempting to think, what was the point? Did they matter? Wouldn't it have been better for everyone to avoid their existence? And that is the impetus behind doctors pushing for abortion. It's an impulse to protect except. We aren't that fragile. Parents, especially mothers, are fierce and given the chance we don't crack, we don't crumble, we rise and we protect. On this episode, we hear about the powerful love parents have for their children, a love that overcomes difficult diagnosis. What do we do when things get hard? How can we insist that every life has value? I'm Samantha Stephenson and this is brave new US.
The message that we might be communicating is that we wouldn't want them around if we could have prevented them. We would have.
We don't talk about a pencil and say, well, it's inherently good or it's inherently evil.
We all are given this gift of suffering. This moment where God is asking us to walk closer with him, to cling to the. Cross.
It's pain and it's suffering and none of us get.
Out of.
It that puts an insane amount of pressure on people to earn or deserve. We're at a point where we're trying to get to a perfect. Place.
We are dealing with not simply shaping a life, but actually shaping the person.
We have the power to change our genetics, but should we? And how might using this power change? Who we really are. This is bioethics and the light ethics welcome to season 1. Brave new US. I first heard Kiara's story the year that I got married, and since then it has radically changed the way that I live my life. The way that I love and her story came back onto my radar because of the question I had asked Doctor Salter. You'll remember her from episode 5. About her clinical experiences. I asked if any of her cases had challenged her or left a particular mark, and it wasn't just one case, she explained, but a whole category of cases. Cases like Chiara and Enrico's, in which the children's diagnosis pointed to prognoses that were especially dim.
Babies that are diagnosed with different kinds of trisomies, so Down syndrome is trisomy 21, but there's a couple other types of trisomies, trisomy 13 and trisomy 18, and individuals with these diagnosis have much worse outcomes, so to speak, than individuals with Down syndrome. Their life is very short, typically only. Most die within one year of birth. Some live, you know, a few years. And unfortunately, these diagnosis come with a lot of physical abnormalities, a lot of heart defects. Feeding issues, breathing issues and certainly developmental issues right there. Blindness, deafness is very common in these diagnosis. So traditionally, trisomy 13 and 18 are have been considered and have been taught in medical school to be lethal diagnosis. Meaning these kids die. Invariably they die young. So when they're born, we should. Basically, we shouldn't. We shouldn't offer advanced medical treatment to them. We should simply place them in their mother's arms and let them pass away peacefully. After birth, now I think that that is a perfectly fine way to manage a child with this sort of diagnosis. But what you see from families of kids with trisomy 13 and 18 is that they want to try. They want to fight for as much life as they can on behalf of their child. From a physician or perhaps an academic or ethics perspective, you might look in and say, gosh, what is the value of a of a life of a child of nine months? That is, they can't see, they can't hear, they can't talk, they can't sit up, they can't communicate. Their heart needs, they need several surgeries. You know, you might sort of apply an external evaluation to a family like this and say the right thing to do is to is to let your child die. But when you talk about when you talk with these families, what you learn is that if they're able to, say, get the heart surgeries and take their kids home, usually these kids are very. Heavily medicalized, meaning they usually have machines that are breathing for them, machines that are feeding them. These families sometimes take their kids home and experiencing and and experience very fulfilling, vibrant, happy lives. With their kids. So they become these, you know, sweet kiddos become full members of their family. They're able to participate in family life, not in the typical way, but in a way that I think a lot of parents would say is refreshing and really opens their eyes to new ways of existing in the. World. Again. Not to say that it's easy to parent or care for these kids. It is certainly not. It comes with many new challenges and I think many new stressors. It can be very hard for families, but parents are notoriously good at finding. The value in their own children, right, like seeing whatever spark of beauty or joy or God's image that they can. So looking at these kiddos through the eyes of their parents that are able to see them and say gosh, I know you see a kid that can't eat or or talk or sit up on their own. But what I see is this beautiful embodiment of joy. You know, every time she smiles at me, we feel a new sense of God's love in our family. I think that that is a perspective we need to hear more of. Inviting us into sort of new possibilities for what God intends for us, that maybe maybe a baby with trisomy 13 or 18 is actually actually has better access to God's heart because there aren't as many things in the way like distracting him or her. We don't. We just don't know. I think humility. It calls us to really respond in humility to these sorts of. Kiddos and their families and really learn from those that are experiencing it first hand.
Doctor Salter is right. We don't hear these stories. And if we don't hear these stories, how are parents who receive these diagnosis supposed to face them with Co? If all they have access to is the medical narrative from doctors who never see the family life of these patients, how can they really even make a choice for parents choosing whether to pursue aggressive medical treatment or whether to hold their kids and allow them to pass away peacefully? How can they really make an informed decision without knowing and hearing these stories?
Yeah, it's a great question, honestly. What we're finding is that medicine does not do a great job of of this sort of informed consent. As you say, we don't do a great job of presenting A balanced picture of what life might be. Like most physicians have been trained under our model to consider these specific diagnosis trisomy 13 and trisomy 18 as lethal as like there's literally no other option than to just provide them comfort care and let them die if they're not aborted prior to birth. But what we're finding is families and parents, especially moms, I think they have the instinct to know that there's more, there's more to the story. And we're finding that they are reaching out to join communities online of other families with these diagnosis. So they're joining Facebook. Groups of other moms with a kid with trisomy 13 or 18. It can be a beautiful example of, you know, communities of patients and families educating each other. And I do think that those sorts of communities do offer an alternative way of seeing. So usually these communities are more prevalent with examples of parents that did choose to treat their child. Did choose to get the heart surgery? Did choose to get the tracheostomy. Did choose to go home on high medical support. So there's an alternative there, right? That's there's something. There's a different option being presented than the one perhaps that the hospital is presenting. The concern was either way, like either just hearing from your physicians or just hearing from the Community on Facebook is that it's one sided. Doctors look at these communities and say, well, that's wonderful. But do they really understand what it means to have a tracheostomy? Like, do they really get that you have to suction every 30 minutes or you have to change the 2? You know, do. They do. They truly understand the labor that's involved or the work that's involved. And I think that you know, as as much as we can find a balanced representation of what it could look like, a variety of different types of outcomes. There's also plenty of parents. I think that would say, you know, we decided not to pursue aggressive therapy for our kiddo. The child was born and we held him until he died in the hospital. And that was a beautiful experience. For us as well, I think that that's a legitimate option, right? So there are many loving options to pursue as parents in these situations. We shouldn't oversimplify in either direction. We should when we can try to accurately depict the the complexity of what these diagnosis offer and embrace the the fact that uncertainty is baked into the. Equation. You never actually really know for sure what someone's life will look like. You cannot know for sure when they will die or what they will die of. There's probably plenty of statistics to give you ideas or probabilities, but the fact is that we have to deal with uncertainty on some level with all of us, you know, that's that's. We can't know our futures in perfect ways again. That's what it is to be human.
So you might be sitting there thinking, wait a minute. Isn't this a Catholic podcast? Aren't we supposed to be pro-life if there is more life to be fought for, how could it be a loving thing to choose to let a child pass? Yes.
That is the harder option for parents to pursue. For sure. Parents are trained and they have the instincts, too, at all costs protect the life of their child so that will always be what feels more loving to them is to fight for every last day, for every last possible treatment, and that that usually is the default for most parents. The ways in which comfort, care or palliative care or Hospice care can be loving, I think, is acknowledging the experience of the child. So again, sometimes these children. Are very comfortable at home and can really experience love from their families, and sometimes most of their life is spent in an ICU bed apart from their families hooked up to a lot of uncomfortable and painful machines. And that, I think, is the perspective that physicians especially and and nurses especially. Actually I think in terms of. Bedside experience you should talk to nurses more than doctors and they will say gosh. You know, we don't know what they're experiencing, but they just, they cry all the time or they can never get comfortable or we have to sedate them for them to be calm at all and that, you know, looking from the outside it, it's hard to know exactly what anyone is experiencing. But I think those are fairly good clues to say, gosh, this kid just seems to be in pain a lot and that. And and if you're able to sort of depict that, that that is a possibility in these cases, right, that that kids are never well enough to go home, that their entire existence is in a. Hospital what that means is that parents are often split up, so one parent is always at the hospital. The other parent is managing the home is managing the other kids is trying to make ends meet with a job that can cause a lot of financial suffering that can cause a lot of family or interpersonal suffering and those sorts of experiences, I think. Maybe invite parents to see how it could be loving. You know, it could be loving both for the child and for the whole family to say we're gonna cherish this little baby. For the hours that we have him in our arms and we're going to let God take him because, you know, he was born with this diagnosis and maybe we don't have to fight for every last day for it to be a valuable experience.
And really, only love can testify to the truth. These vibes have value. It can't be measured in minutes because souls live for eternity. That love story we started with. It ends with a letter. Kiara and Enrico's third child Francesco was born in perfect health in 2011 after his mother heroically delayed cancer treatments to bring him safely into the world. Yes, you heard that right after losing her first two babies shortly after their birth. Chiara, during her third pregnancy, discovered that she had cancer. And so out of love and concern for her child. She delayed her cancer treatments until after her pregnancy before she passed. A year later, she wrote him this letter.
Here.
Dear Francesco, today we celebrate your first birthday and we're asking ourselves what we can give you that will last through the years. So we've decided to write you a letter. You have been a tremendous gift to us in our lives because you have helped us look beyond our human limits. When the doctors wanted to scare us, your. Life that was so fragile gave us strength to go forward. For what little I have learned during these years, I can tell you only that love is the center of our lives. Because we are born from an act of love, we live for and to be loved and die to know the true love of God. The goal of our life is to love and to be loved, always ready to learn how to love the others, as only God can teach you. Love consumes you, but it is beautiful to die consumed exactly like a candle that goes out only when it has reached its goal. Anything that you do in life will make sense only if you look at it in view of eternal life. If you are truly loving you realize this from the fact that nothing belongs to you because everything is a gift. As Saint Francis says, the opposite of love is possession. We loved your brother and sister Mary and David. And we love you knowing that you all are not ours and that you all were not for us. And this is how it should be for everything in life. Everything that you have never belongs to you because it is a gift that God gives you so that you can make it bear fruit. Never be discouraged, my son. God never takes anything away. And if he takes away, it is because he wants to give you so much more. Thanks to Mary and David, we are even more in love with eternal life and we have stopped fearing death. God has taken from us only in order to give us a heart that is bigger and more open to welcome eternity in this life. In the CC I fell in love with the joy of the Friars that lived believing in God's Providence. So I asked the Lord for the Grace to believe in his Providence, that they spoke of to believe in his father. That truly does not make you lack anything. Brother Vito helped us on this journey in believing this promise. We got married without anything but we put God in first place. Believed in the love that he asked us to. By taking this big leave, we have never been disappointed. Your name is Francesco because Saint Francis changed our lives and we hope that he can be an example also for you. It's beautiful to have examples of lies that remind you that you can expect the greatest joy already on this earth with God as our guide. We know that you are special and that you have a great mission. The Lord has wanted you from eternity, and he will show you the road to follow if you open your heart, trust him. It is worth the while. Kiara's parting words to her son have become the mantra of my life. A candle consumed. This is the image of how I want to give of myself to my husband and my children. It really feels that way sometimes. But what else is the point of life except to give ourselves away to one another? I can't pretend to know why God allows these kinds of ruptures inside of our hearts. Why this loss? Why this family? Why now? Why me? I don't see as he sees. But I do see the beauty that comes out of it. I see that none of it is wasted. The helplessness of these babies, the helplessness we're all born into. Really. It is a gift. When we look at any single human person and ask how could that life be valuable, we miss the essential truth. We have been created in the image and likeness of God, and that doesn't just mean we are rational beings. It means we're relational beings. When we point to others and question their value. We isolate them from ourselves, as though we're not intimately bound up with every other human person. We have, as Dorothy Day observed, forgotten that we. Belong to one another. The church in her wisdom tells us that we cannot find ourselves without sincere gift of self, Gandhi said. Something similar. The best way to find oneself is to lose oneself in the service of another. This is the paradox of love. There's no such thing as selflessness. When we give to someone who is vulnerable, what do we get back? They give us ourselves. They give us the opportunity to be fully alive. We are more ourselves because someone else has offered us his or her own vulnerability. Yes, this is about dignity and justice, but it is also about healing, something very broken inside our own souls. We all know this lie that getting or obtaining anything can fulfill us, or close up the holes inside of us. We ache and to some extent we will always be aching because we long. Eternity. The only thing we can direct that longing to is. Love. Loving is the only thing we get more out of when we give it away. Those Bible stories about the widow's flower or the Maccabees oil lasting days and days. Those are allegories of this kind of inexhaustible love. The mystery of how it perpetuated itself, that's what we were meant for. Anything less than that. It's counterfeit. And his stories are all so beautiful. Like Mary, I want to ponder them in my heart. Without denying that or diminishing its value in any way, I still have to ask, what if we could really harness the power of genetic editing? What if we could fix these trisomies in utero? What if those babies could live?
All will be well and all will be well and all will be well.
To treasure all the good that God brings out of suffering that will deems it, but it doesn't make it good. Is genetic editing just a tool? At what point did something so fundamentally alter us that we recognize it as the Babble of our time? The tower built by human hands to try to? God's power for ourselves. Where do we draw the line between what we choose to fix and what we entrust to God's hands? Next. Brave new lives we hear from a mother whose child needed this kind of intensive care, who provided it for her daughter for over 20 years. What does she think about the possibility of going back and undoing it, of erasing all the anxiety and family pressures, sleepless nights and worry about her? Matters most basic needs. If she could snap out the genes responsible, would she? That's next time on brave new US.
Will be well.
This episode of Brave new US is written and produced by me. Samantha Stephenson. Special thanks to Mackenzie Kim, Lauren Klingman, and Jessica Gearhart for her original track. All will be well. You can find Jessica on band camp LinkedIn. Our show notes these are messages that you think are important. If this show has touched you. Please share it. I firmly believe that the world needs these messages and I hope you do too. Help us spread the word. God bless you and thank you for listening.
And I will be well and will be well. Well, and I will be well and I will be well, be well, be well be well. All will be well and I will be well and all will be well. Will be well and I will be well and will be well. Will be. Well, will be well. I will be well and I will be well and I will be well.