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Life Defenders - What to Do When Doctors Say Your Baby Won’t Survive with Dr. Robin Pierucci · WOAY Podcasts

• 0:00
  Dr. Robin Pierucci: No matter what the diagnosis is, we owe your child medical excellence and compassion.
• 0:07
  Victor Nieves: Just because somebody's life is short does not mean that it's worth less than somebody else's life who's long.
• 0:13
  Victor Nieves: I mean, it the implications of that would be ridiculous.
• 0:18
  Dr. Robin Pierucci: There is no such thing as a life not worth living.
• 0:34
  Victor Nieves: Welcome to Life Defenders.
• 0:36
  Victor Nieves: I'm Victor Nieves, president of Life Issues Institute.
• 0:39
  Victor Nieves: Today we're joined by Dr.
• 0:40
  Victor Nieves: Robin Pierucci.
• 0:41
  Victor Nieves: She's board certified in pediatrics and neonatology.
• 0:44
  Victor Nieves: She has a master's degree in bioethics, and she's a member of the American Academy of Pediatrics.
• 0:49
  Victor Nieves: Well, Dr.
• 0:50
  Victor Nieves: Pierucci, we have something of a difficult topic that we're going to be discussing today, but I'm very glad that we have you because I genuinely consider you to be one of the experts on this topic, certainly the most knowledgeable person that I know on perinatal hospice.
• 1:02
  Victor Nieves: Thank you for joining us today.
• 1:04
  Dr. Robin Pierucci: It's a pleasure to be here.
• 1:05
  Victor Nieves: Well, Dr.
• 1:05
  Victor Nieves: Percci, I think a good place to start, because this is such an important conversation, but not many people have really heard about it, right?
• 1:11
  Victor Nieves: We think sometimes of hospice and we think of, you know, the palliative care.
• 1:15
  Victor Nieves: We think of the end in our older age.
• 1:17
  Victor Nieves: We think of maybe our grandparents or et cetera.
• 1:20
  Victor Nieves: Not many people think of how that might apply to very young people, to perinatal hospice.
• 1:25
  Victor Nieves: If you could just give us a quick explanation, what is perinatal hospice?
• 1:29
  Victor Nieves: Who is it for?
• 1:30
  Victor Nieves: That sort of thing.
• 1:31
  Dr. Robin Pierucci: Sure.
• 1:31
  Dr. Robin Pierucci: And you're right.
• 1:32
  Dr. Robin Pierucci: It is counterintuitive to be talking about any hospice or palliative care at the beginning of life, because that's just not how it's supposed to roll.
• 1:42
  Dr. Robin Pierucci: In general, hospice is about treating the whole person mentally, physically, socially, religiously, in all the different places to nurture someone when there is a terminal diagnosis, when there is something we absolutely cannot heal.
• 1:56
  Dr. Robin Pierucci: The distinction between hospice and palliative care is palliative care is more about how do I live with something that I can't heal that is beyond our technology.
• 2:07
  Dr. Robin Pierucci: So there can be concurrent care for things you can treat.
• 2:11
  Dr. Robin Pierucci: So those are kind of the wide definitions of how to use this.
• 2:16
  Dr. Robin Pierucci: When it comes to applying it to a baby or a neonate, now we're looking at often little ones who have a prenatal diagnosis.
• 2:25
  Dr. Robin Pierucci: And this is where it gets a little dicey because I have transitioned 25 years of being a neonatologist from ever labeling anything a lethal diagnosis.
• 2:37
  Dr. Robin Pierucci: I just won't anymore because there's so much we don't know.
• 2:40
  Dr. Robin Pierucci: But we do have something that could be life limiting.
• 2:43
  Dr. Robin Pierucci: So how do we wrap this family around treating the inherent humanity of this little one at the same time with all humility, also always admitting that there's things that I don't have the ability to heal?
• 2:56
  Dr. Robin Pierucci: And yet how do I help you live well.
• 2:58
  Dr. Robin Pierucci: So that is where the perinatal palliative care services have a real role to play as we let the babies tell us what they can and cannot respond to.
• 3:09
  Victor Nieves: Dr.
• 3:09
  Victor Nieves: Pierucci, as you're explaining this, I'm just thinking in my head, and maybe it's a silly question, what's the alternative?
• 3:14
  Victor Nieves: Because so many people haven't even heard of this.
• 3:16
  Victor Nieves: So many people aren't familiar.
• 3:17
  Victor Nieves: And I mean, you can imagine for those of us who have not been in that position, you could maybe mentally put yourself in the shoes of a parent who receives these diagnoses that would be heartbreaking.
• 3:26
  Victor Nieves: I mean, you don't, there's a lot of questions, you don't know what's going to happen.
• 3:29
  Victor Nieves: What has been maybe the predominant medical philosophy when it comes to babies, little precious babies who are given a, you know, a negative diagnosis.
• 3:38
  Victor Nieves: We're not sure what their life is going to look like.
• 3:40
  Victor Nieves: Have they been discarded?
• 3:41
  Victor Nieves: Have they been focused on?
• 3:43
  Victor Nieves: Because, you know, in a way, perinatal hospice just seems like healthcare.
• 3:46
  Victor Nieves: It just seems like the no-brainer.
• 3:48
  Victor Nieves: This is what we should do to help all living human beings.
• 3:51
  Dr. Robin Pierucci: Here's where it gets really dicey, because we have to admit the culture that we live in, which does not find life inherently valuable.
• 4:01
  Dr. Robin Pierucci: And so this is where I become really cautious and where you have to investigate the actual people you get to work with, because different palliative care programs do this differently.
• 4:13
  Dr. Robin Pierucci: And I have met wonderful programs who absolutely are about how do I help someone live with what we can only incompletely or just not at all heal.
• 4:23
  Dr. Robin Pierucci: And then there are other programs who I've seen honestly, palliative care becomes this euphemism for quote comfort care.
• 4:31
  Dr. Robin Pierucci: And in its worst forms, I've seen it be used as ignore until dead.
• 4:36
  Dr. Robin Pierucci: I mean, this is the reality.
• 4:38
  Dr. Robin Pierucci: And I have to say, most of the time is you're somewhere in the middle.
• 4:41
  Dr. Robin Pierucci: People mean well.
• 4:42
  Dr. Robin Pierucci: I don't know any doctors.
• 4:44
  Dr. Robin Pierucci: I don't know anyone in palliative care who goes into this without the best of intentions.
• 4:48
  Dr. Robin Pierucci: How do we help someone in an impossible situation?
• 4:52
  Dr. Robin Pierucci: And one that certainly no parent ever signs up for.
• 4:55
  Dr. Robin Pierucci: And yet we have to be so careful about becoming a self-fulfilling prophecy.
• 5:00
  Dr. Robin Pierucci: And by looking purely at treating a diagnosis instead of treating a human being, we give into we know 100% what's going to happen.
• 5:10
  Dr. Robin Pierucci: And we miss the opportunity for letting God step in.
• 5:14
  Dr. Robin Pierucci: We miss the opportunity for just admitting how much we don't know.
• 5:17
  Dr. Robin Pierucci: Think of it this way: in no other patient population do you sign them up for hospice before actually meeting the patient.
• 5:24
  Dr. Robin Pierucci: And yet, that's exactly what happens when you get a prenatal diagnosis.
• 5:30
  Dr. Robin Pierucci: We can learn some things, but not everything.
• 5:33
  Dr. Robin Pierucci: Think of it this way: if you get a diagnosis of cancer, I've seen people live for three days and I've seen them live for 30 years.
• 5:40
  Dr. Robin Pierucci: Same diagnosis.
• 5:41
  Dr. Robin Pierucci: And until you show up and take care of the actual unique individual, you're not going to know how their physiology is going to respond.
• 5:52
  Dr. Robin Pierucci: There's a great phrase: a diagnosis is not equal to a prognosis, meaning, yeah, you've got a diagnosis, but we don't 100% know how that's going to play out in the future.
• 6:02
  Dr. Robin Pierucci: How are they going to respond to treatment?
• 6:05
  Dr. Robin Pierucci: How are the stressors of life or their physiologic makeup?
• 6:09
  Dr. Robin Pierucci: And I swear some people just determination and prayer.
• 6:12
  Dr. Robin Pierucci: Always leaving room for how much that affects us.
• 6:16
  Dr. Robin Pierucci: And, you know, I can say I've seen miracles happen in ways that we didn't know to pray for, just with the outpouring of love that happens.
• 6:23
  Dr. Robin Pierucci: But once again, I just we have to be so cautious about self-determining before we get there what the story is going to look like.
• 6:30
  Victor Nieves: Well, it sounds like self-fulfilling prophecies.
• 6:32
  Victor Nieves: You know, I talk about this all the time because we're trying to change the culture when we're trying to protect life.
• 6:37
  Victor Nieves: And on occasion, we run into people who will have these self-fulfilling prophecies of their own defeat.
• 6:43
  Victor Nieves: And I always tell people that's not impressive.
• 6:45
  Victor Nieves: I'm not going to be amazed by your ability to tell me that you're going to fail.
• 6:49
  Victor Nieves: That's not an accomplishment in the slightest.
• 6:51
  Victor Nieves: And so I think that we see that, not just, you know, in sense of like neonatal care, but we see that it just kind of in medicine in general.
• 6:57
  Victor Nieves: We see a lot of that.
• 6:58
  Victor Nieves: And it's really a shame.
• 6:59
  Victor Nieves: And I think what you're talking about, that distinction, it can be hard to put to words, but I think we all know inherently what you're describing.
• 7:06
  Victor Nieves: We may have had concerns of our own.
• 7:07
  Victor Nieves: I had concerns of my own when it comes to hospice with loved ones and making sure that we're not crossing into dangerous territory of just, well, they're gonna die anyway.
• 7:15
  Victor Nieves: So we said it kind of like ignore them to death, sort of a thing.
• 7:18
  Victor Nieves: And just, well, they're put them on a back burner and ignore them.
• 7:22
  Victor Nieves: So I think it's very important to make that distinction and to actually be pursuing legitimate care, not just, you know, throwing the baby out with the bathwater.
• 7:30
  Dr. Robin Pierucci: Well, exactly.
• 7:30
  Dr. Robin Pierucci: I love to remind parents, no matter what the diagnosis is, we owe your child medical excellence and compassion.
• 7:39
  Dr. Robin Pierucci: It's not one without the other.
• 7:40
  Dr. Robin Pierucci: At no point do they not deserve the full body of medical excellence that we would give any other baby.
• 7:46
  Dr. Robin Pierucci: One of the, you know, populations this has played out and just so clearly illustrates this is kids with trisomy 13 and 18.
• 7:55
  Dr. Robin Pierucci: When I went to med school 100 years ago, I was literally taught that they were lethal diagnoses and no one survives.
• 8:02
  Dr. Robin Pierucci: That's not true.
• 8:03
  Dr. Robin Pierucci: We know it's not true.
• 8:05
  Dr. Robin Pierucci: And yet there are physicians who continue to behave like that.
• 8:09
  Dr. Robin Pierucci: And it's literally only one year ago that the American Academy of Pediatrics, not known for their some of their viewpoints, I'll just leave it at that, but even they admitted that it is not ethically appropriate to remove life-sustaining interventions based purely on a prenatal diagnosis, specifically the trisomy 13 and 18 community.
• 8:33
  Dr. Robin Pierucci: This was a huge victory for this population.
• 8:36
  Dr. Robin Pierucci: And yet I cannot believe how many people haven't read the memo because we have to argue with this all the time.
• 8:41
  Dr. Robin Pierucci: So I shouldn't say all the time.
• 8:43
  Dr. Robin Pierucci: Frequently, I'll go with it frequently.
• 8:45
  Dr. Robin Pierucci: And yes, you have to take into, once again, the individual situation, what is their physiology, what parts of this can we help?
• 8:53
  Dr. Robin Pierucci: But at no time does any diagnosis ever negate diagnosis number one.
• 8:58
  Dr. Robin Pierucci: It's a baby.
• 8:59
  Dr. Robin Pierucci: And so, how do we get to show up?
• 9:01
  Dr. Robin Pierucci: And what I get to do is talk with parents about here's.
• 9:05
  Dr. Robin Pierucci: We're gonna talk about what is responding to resuscitation look like, just in the delivery room.
• 9:09
  Dr. Robin Pierucci: What is not responding looking like?
• 9:11
  Dr. Robin Pierucci: And we're gonna let the baby help direct which direction we should go.
• 9:16
  Dr. Robin Pierucci: Because I never want the parents to look back and think, first of all, that we decide life and death.
• 9:21
  Dr. Robin Pierucci: No, I try to leave that in bigger hands than my own.
• 9:24
  Dr. Robin Pierucci: But we also have to make sure that they're able to live with whatever is happening and don't look back and say, what if should we have done?
• 9:33
  Victor Nieves: Well, Dr.
• 9:33
  Victor Nieves: Pierucci, in light of that, obviously the most important diagnosis that it's a baby.
• 9:37
  Victor Nieves: You mentioned earlier that there are some miracles that you have seen.
• 9:41
  Victor Nieves: And I think it would be very encouraging for parents who might find themselves in these situations to hear some of those stories.
• 9:48
  Victor Nieves: And miracles come in different forms and fashions.
• 9:50
  Victor Nieves: They look different for families.
• 9:52
  Victor Nieves: But I worry that when it comes to a baby with a negative diagnosis, that perhaps many doctors are going to the lowest common denominator.
• 10:00
  Victor Nieves: And they're saying, well, this is because maybe they don't want to give somebody false hope, or maybe they don't want to set, you know, unreasonable expectations.
• 10:07
  Victor Nieves: And I can appreciate that.
• 10:08
  Victor Nieves: I can understand where they're coming from.
• 10:10
  Victor Nieves: But when we lower our standard of or our maybe our expectations, when we lower our expectations to the lowest common denominator, we almost mentally forbid a miracle.
• 10:20
  Victor Nieves: We almost take ourselves out of the possibility of maybe there's more to this than the black and white may seem.
• 10:27
  Dr. Robin Pierucci: 100%.
• 10:28
  Dr. Robin Pierucci: There's the phrase quality of life is one of those that worries me because there's studies that show medical personnel view the quality of life when they're given a bunch of, oh, what if this happens or what if this happens?
• 10:44
  Dr. Robin Pierucci: And they're all like, oh yeah, that's not worth living.
• 10:46
  Dr. Robin Pierucci: And if you do the same questions to parents, they're like, I'm good, I'm in.
• 10:51
  Dr. Robin Pierucci: So the medical personnel we know from actual studies is incredibly cynical about this and more quick to write off a baby with a certain diagnosis because they say that's not a sufficient quality of life to continue.
• 11:08
  Dr. Robin Pierucci: And the, you know what?
• 11:10
  Dr. Robin Pierucci: The person who has to fall in love with this child are mom and dad.
• 11:13
  Dr. Robin Pierucci: That's not our role.
• 11:15
  Dr. Robin Pierucci: And I you can get into economic discussions and all the different things that fall.
• 11:21
  Dr. Robin Pierucci: On the other hand, who makes the decisions for this little one and who gets to fall in love with them are the parents.
• 11:28
  Dr. Robin Pierucci: That is not a physician's role to vote them off the island preemptively because they think their quote, quality of life, whatever that means to them, or whatever they've been through, or whatever trauma they've been through.
• 11:42
  Dr. Robin Pierucci: That's not the spot for that.
• 11:44
  Dr. Robin Pierucci: So one of the miracles that I've seen, honestly, is when I watch these babies teach what love is all about to the medical staff.
• 11:53
  Dr. Robin Pierucci: One of the most remarkable moments, there was a family whose baby had been given a diagnosis that was life-limiting.
• 12:00
  Dr. Robin Pierucci: And when I work with the families, we write a birth plan, which is also funny because I used to hate birth plans because the longer it was, the least little it was the less likely I was to be able to fulfill any of it.
• 12:12
  Dr. Robin Pierucci: This is a different birth plan where we get to remind the whole staff, yes, we are not in denial.
• 12:19
  Dr. Robin Pierucci: We are in love with our baby.
• 12:21
  Dr. Robin Pierucci: And please give our child a chance to be evaluated and stabilized, just like you would anyone else.
• 12:27
  Dr. Robin Pierucci: And then we're gonna see how the little one directs us.
• 12:31
  Dr. Robin Pierucci: And so in this one particular case, one of the physicians on the team had said, no, there is nothing to do here, not offering anything.
• 12:39
  Dr. Robin Pierucci: And about the third time we wrote Open Birth Plan, and clearly the parents were not giving up, and a multidisciplinary conference later.
• 12:47
  Dr. Robin Pierucci: This one physician called the parents back and said, you know what?
• 12:50
  Dr. Robin Pierucci: I wasn't thinking about this as a parent and gave permission to start a med that would help the baby to be stabilized and then let the child declare which direction things would go.
• 13:02
  Dr. Robin Pierucci: That baby lived for five days before there was multiple system kind of organ failure.
• 13:08
  Dr. Robin Pierucci: But the family has said, I would never have missed those days of meeting our daughter.
• 13:13
  Dr. Robin Pierucci: And that for to bring that, and the whole staff was in tears with them and for them.
• 13:19
  Dr. Robin Pierucci: I think it was John Paul II, and forgive me, I'm gonna, my summary of his beautiful words is never sufficient.
• 13:26
  Dr. Robin Pierucci: But he was talking about why do we have suffering?
• 13:28
  Dr. Robin Pierucci: And when he talks about suffering releases love, like I can sign up for that.
• 13:34
  Dr. Robin Pierucci: Watching these little ones release love in families that are broken or in relationships that are broken, and the love that they teach us about is amazing.
• 13:45
  Dr. Robin Pierucci: I'm pretty convinced our children rescue us all the time.
• 13:48
  Dr. Robin Pierucci: I'm quite convinced that if in the Garden of Eden, if there had been a child, the first thing Eve would have said is don't eat from the tree, and she would have been held responsible and not done it.
• 13:58
  Dr. Robin Pierucci: That's sorry, there that's not written theology anywhere.
• 14:01
  Dr. Robin Pierucci: That's just, but our children rescue us and we behave better.
• 14:05
  Dr. Robin Pierucci: We are better human beings because we get to love them.
• 14:08
  Victor Nieves: Absolutely.
• 14:08
  Victor Nieves: You know, Dr.
• 14:09
  Victor Nieves: Pierucci, that story you tell, it reminds me, and we should all keep this, you know, sometimes life is crazy and we end up in weird places mentally.
• 14:17
  Victor Nieves: We should never forget that a short life is not a worthless life.
• 14:21
  Victor Nieves: And it seems that there are those who they get stuff mixed up.
• 14:24
  Victor Nieves: They they get things out of order.
• 14:26
  Victor Nieves: Just because somebody's life is short does not mean that it's worth less than somebody else's life who's long.
• 14:32
  Victor Nieves: I mean, it the implications of that would be ridiculous.
• 14:35
  Victor Nieves: That would that would mean that an 18-year-old is worth far less than their grandparent.
• 14:38
  Victor Nieves: And it's, well, we're all human beings.
• 14:40
  Victor Nieves: So we should be able to do that.
• 14:41
  Dr. Robin Pierucci: There is no such thing as a life not worth living.
• 14:44
  Victor Nieves: Exactly.
• 14:44
  Victor Nieves: And one of the other things, Dr.
• 14:46
  Victor Nieves: Pierucci, that comes to my mind is you tell the story of a baby who lived for five days.
• 14:51
  Victor Nieves: And, you know, there's probably someone who's a bit cynical and they hear that and they think, well, okay, sure.
• 14:56
  Victor Nieves: You know, there's love, but why bother?
• 14:58
  Victor Nieves: You know, this is what we'll hear.
• 14:59
  Victor Nieves: We hate to hear it, but we hear it.
• 15:01
  Victor Nieves: This is reality.
• 15:02
  Victor Nieves: Let me just, for the sake of the listener, that baby never knew anything but tremendous love.
• 15:07
  Dr. Robin Pierucci: Yes.
• 15:08
  Victor Nieves: How much more, I mean, could any of us ask for in our lives, short, long, or somewhere in between, to only ever know love, genuine love from your parents that everybody who could poured into you, and then you changed their life forever.
• 15:22
  Victor Nieves: Everybody in that medical room, every, you know, the parents, the siblings, the cousins, the aunts, the uncles, people who hear this story, who are detached by a thousand miles, will hear that story and think of the love that now poured into the world as a result of that child's short life.
• 15:37
  Victor Nieves: There are people who live a long life and never impact the world in the way that that child did.
• 15:41
  Victor Nieves: And so my hat goes off to the parents who say, no, actually, it in spite of whatever the medical professionals may say to me, in spite of whatever it may look like, I'm going to trust God in the face of any of it.
• 15:53
  Victor Nieves: And I'm going to do the one thing that I know for a fact I can do, and that's love my child.
• 15:58
  Victor Nieves: There is nothing wrong with a parent deciding that they want to love their child.
• 16:01
  Victor Nieves: And so when we look at perinatal hospice, I mean, this is a conversation that's it's even hard for me as a new parent to even think about it, to put yourself in the shoes of, oh my goodness, I can't imagine.
• 16:12
  Victor Nieves: But what I can imagine is loving, right?
• 16:14
  Victor Nieves: And that's not to be cliche, but it's true.
• 16:16
  Victor Nieves: We can love anybody on this planet, no matter how short their life is, the worst thing that we could possibly do.
• 16:23
  Victor Nieves: I mean, you want to add insult to injury.
• 16:26
  Victor Nieves: The worst thing that we could do in the face of a negative diagnosis is preemptively and brutally kill someone.
• 16:32
  Victor Nieves: But there are so many people who would look at negative diagnosis in the womb and they say, you know what we should really do is we should just abort the child.
• 16:41
  Victor Nieves: We should just kill the child in advance because they may die later.
• 16:45
  Victor Nieves: That doesn't make any sense, Dr.
• 16:46
  Victor Nieves: Pierucci.
• 16:47
  Victor Nieves: I'm gonna die.
• 16:47
  Victor Nieves: You're gonna die.
• 16:48
  Victor Nieves: Not to be morbid.
• 16:49
  Victor Nieves: We're all going to die at some point in time.
• 16:51
  Victor Nieves: But if somebody came up to me and said, hey, Victor, you know, at some point, you are going to pass.
• 16:56
  Victor Nieves: So I think we just get this over with now.
• 16:58
  Victor Nieves: No, no, I don't agree to those terms.
• 17:00
  Victor Nieves: And so, you know, why would we apply that to the unborn?
• 17:03
  Victor Nieves: Sorry to be long-winded, Dr.
• 17:04
  Victor Nieves: Pierucci, but it just, I mean, this is just such
• 17:07
  Dr. Robin Pierucci: Gosh, two quick stories that illustrate the point.
• 17:10
  Dr. Robin Pierucci: There was a mom who had had an abortion who said to one of the moms that I was working with through navigating fetal concerns, and the mom I was working with was saying, you know, she was so grateful that she was continuing the pregnancy and had felt supported, you know.
• 17:25
  Dr. Robin Pierucci: And the other mom said, Yeah, I chose to have the abortion.
• 17:30
  Dr. Robin Pierucci: And because of a prenatal diagnosis, and she says, you know what?
• 17:33
  Dr. Robin Pierucci: All that did is make my baby dead sooner.
• 17:35
  Dr. Robin Pierucci: It didn't make me hurt any less.
• 17:38
  Dr. Robin Pierucci: And I just, oh, what a horrible but brutally honest statement.
• 17:43
  Dr. Robin Pierucci: And then on the flip side, a different mom I worked with who her baby had passed, and I looked at her, I said, but you succeeded.
• 17:51
  Dr. Robin Pierucci: Your baby was loved every nanosecond of their entire life.
• 17:56
  Dr. Robin Pierucci: You succeeded in being the parent that that child needed and that God arranged.
• 18:02
  Dr. Robin Pierucci: And she looked at me and said, No one's ever told me I've succeeded at anything.
• 18:06
  Dr. Robin Pierucci: And yes, she did.
• 18:07
  Dr. Robin Pierucci: So to get to tell her that was such a gift.
• 18:11
  Dr. Robin Pierucci: I mean, was amazing to even be part of.
• 18:13
  Dr. Robin Pierucci: And there's enough literature in the mental health space that talks about healthy grieving and not healthy grieving and complicated grief.
• 18:23
  Dr. Robin Pierucci: And these parents who even, no matter the span of the lifetime, they know that they've done everything, including loving their child well.
• 18:33
  Dr. Robin Pierucci: And, you know, this gets into some really dicey hot water about people who have a prenatal diagnosis and were offered an early induction.
• 18:45
  Dr. Robin Pierucci: So they've already said there's the baby can't survive.
• 18:48
  Dr. Robin Pierucci: So why continue the pregnancy?
• 18:50
  Dr. Robin Pierucci: And I know parents, because it's been in the press and then often big splashy articles.
• 18:56
  Dr. Robin Pierucci: They they made that decision out of love.
• 18:59
  Dr. Robin Pierucci: And yet I worry how are they gonna grieve later on when they didn't continue the pregnancy to its conclusion?
• 19:08
  Dr. Robin Pierucci: And we made ourselves small g gods.
• 19:11
  Dr. Robin Pierucci: We decided the baby had no reason to exist anymore because the purpose of that early delivery was death.
• 19:18
  Dr. Robin Pierucci: It was never to intervene.
• 19:20
  Dr. Robin Pierucci: And that's where ethically we get into some really hot water.
• 19:24
  Dr. Robin Pierucci: But there will be people who will hear me say that and be angry and hurt because they did make that choice.
• 19:30
  Dr. Robin Pierucci: And I just I keep them in my prayers.
• 19:32
  Dr. Robin Pierucci: It's not something that is ethically licit to intentionally end a pregnancy early and doing so in a way that there is zero chance of survival.
• 19:43
  Dr. Robin Pierucci: You're intentionally ending it for the baby to die.
• 19:46
  Dr. Robin Pierucci: That's not any different than an abortion.
• 19:48
  Dr. Robin Pierucci: It's just different words.
• 19:50
  Dr. Robin Pierucci: And that's like I say, there'll be people that I will get some unkind words for saying that out loud, but it's true.
• 19:58
  Dr. Robin Pierucci: And when it's hard to continue the pregnancy is exactly when we need to reach out for help, whether, and it doesn't have to be from me, my goodness.
• 20:07
  Dr. Robin Pierucci: There are lots of other good people doing this, but it is important to know that your baby is valuable, the mom is valuable, there is no life that isn't inherently wonderfully made.
• 20:20
  Dr. Robin Pierucci: And we're not in charge of the length of life, as you were saying.
• 20:24
  Dr. Robin Pierucci: Yeah, we all have this fatal diagnosis.
• 20:26
  Dr. Robin Pierucci: We were born human, that's what's gonna happen.
• 20:29
  Dr. Robin Pierucci: And yet these little ones do something that I fail at probably just by getting out of bed.
• 20:35
  Dr. Robin Pierucci: They've never offended God.
• 20:37
  Victor Nieves: True.
• 20:37
  Victor Nieves: And you know, I want to come to your defense, Dr.
• 20:39
  Victor Nieves: Pierucci, because when we talk about this, again, these are these are hard topics.
• 20:44
  Victor Nieves: So hopefully, listeners, when they hear it, they'll give grace to us as well as we try to communicate this.
• 20:49
  Victor Nieves: But let's just make it more generic.
• 20:51
  Victor Nieves: Let's say we don't bring up the examples of a parent who has an abortion because we hate that parent, because we just stay up at night wringing our hands and thinking of ways to make them suffer or something.
• 21:02
  Victor Nieves: We we bring up these examples to save other people from making a bad decision, to save babies from being preemptively killed.
• 21:11
  Victor Nieves: And it's very uncomfortable.
• 21:12
  Victor Nieves: It is.
• 21:13
  Victor Nieves: It's just the truth.
• 21:14
  Victor Nieves: Matters of life and death are often very uncomfortable.
• 21:17
  Victor Nieves: That is the reality of life.
• 21:18
  Victor Nieves: But we don't bring it up to shame and to hurt people.
• 21:22
  Victor Nieves: We bring it up, I know you're heart as you talk about this.
• 21:24
  Victor Nieves: You're bringing it up because you genuinely want the best for them, for the people who have already made that decision, but also for other people to save them from the same, not to make an elementary example out of it.
• 21:36
  Victor Nieves: But if I once stuck a fork in an outlet, it might be painful to remember that I stuck a fork in an outlet.
• 21:42
  Victor Nieves: But we would still say to the world, hey, don't do that, not to shame those who have, but to protect those who have not yet, and say, hey, maybe we don't, maybe we learn.
• 21:50
  Victor Nieves: And so, although that's an elementary example, the principle applies here as well.
• 21:53
  Victor Nieves: We're not doing this to make people feel bad about the decision that they made in a very difficult place.
• 21:58
  Victor Nieves: We just really do we want the best.
• 22:01
  Victor Nieves: We believe it's a human being, for one thing.
• 22:03
  Victor Nieves: That's kind of the focal point of the conversation is that that baby is a baby.
• 22:07
  Victor Nieves: It's a human being whose life has value, and we want to protect it.
• 22:11
  Victor Nieves: That's all that we're trying to do here.
• 22:13
  Dr. Robin Pierucci: Right.
• 22:13
  Dr. Robin Pierucci: You know, the reality is, first of all, you can't blame yourself for making a decision with the information you had at that time.
• 22:20
  Dr. Robin Pierucci: And the information that you can learn, that you can gather, even medical technology changes.
• 22:26
  Dr. Robin Pierucci: So you make the best decision you can at any given moment with all the particulars and unique idiosyncrasies of that given moment.
• 22:35
  Dr. Robin Pierucci: So this is really not about blame.
• 22:38
  Dr. Robin Pierucci: It is about uncovering the reality of we are in a world where the obstetric guiding group, ACOG, American College of Obstetrics Gynecology, has made termination literally in so many words, in that by their policy statement, synonymous with healthcare as opposed to Hippocratic medicine, do no harm, which is non-denominational.
• 23:05
  Dr. Robin Pierucci: How do I show up and care for two people?
• 23:08
  Dr. Robin Pierucci: I've never known an obstetrician who said they don't have two patients.
• 23:12
  Dr. Robin Pierucci: And yet one kind of can get voted off the island for a host of reasons.
• 23:18
  Dr. Robin Pierucci: And that's the pushback.
• 23:20
  Dr. Robin Pierucci: How do we continue to care well about both people because they are always people?
• 23:26
  Dr. Robin Pierucci: One doesn't become a platypus or a tree or it's still a human being from conception forward.
• 23:33
  Dr. Robin Pierucci: How do we care well for each other, for both mom and that baby, and nourish the mother-infant dyad, which is such a unique connection.
• 23:43
  Dr. Robin Pierucci: And not to leave dads out of it, because they're, it's just it's different, and that's okay.
• 23:47
  Dr. Robin Pierucci: How do we help nourish both of those so that we have healthier people, regardless of the journey that we're asked to walk, which often is not one any of us would sign up for.
• 23:58
  Dr. Robin Pierucci: How do we do this well?
• 23:59
  Dr. Robin Pierucci: And at its best, to begin bring it back to where we started the conversation, the palliative care folks who are really good at this listen in those spaces of how do we care well physically, emotionally, spiritually for the entire family, patient, the family members, the caregivers.
• 24:19
  Dr. Robin Pierucci: How do we care for all these people so that they can live well and live with the decisions that were made in a time of trauma?
• 24:28
  Dr. Robin Pierucci: When it's hard to make solid medical decision making, that's difficult, which is why so much of what I worry about is how do I give trauma-informed care that helps someone literally calm the physiologic response of how do I escape this?
• 24:43
  Dr. Robin Pierucci: Or when you're so traumatized you can't even hear anymore.
• 24:46
  Dr. Robin Pierucci: We've all had that happen where all you hear it sounds like Charlie Brown's teacher talking.
• 24:50
  Dr. Robin Pierucci: You know, you know, you know you can't understand a word.
• 24:52
  Dr. Robin Pierucci: You know they're talking in English.
• 24:53
  Dr. Robin Pierucci: I have no idea what was just said.
• 24:55
  Dr. Robin Pierucci: How do we back away from those moments, give people a chance to breathe, calm, um, and restore safety and connection so that they can advocate for their baby, for the health of their loved one.
• 25:09
  Dr. Robin Pierucci: That's true in general and is a useful tool for all of those critical situations where we have to make tough decisions.
• 25:17
  Victor Nieves: Dr.
• 25:17
  Victor Nieves: Pierucci, it can be very difficult for young families to find an OB that they like.
• 25:22
  Victor Nieves: Just, I mean, we're talking bare bones here sometimes, where it's just a pro-life OB or just somebody that they relate to that they like.
• 25:29
  Victor Nieves: So then when you introduce these other factors, it can become very difficult for people.
• 25:33
  Victor Nieves: And so I can imagine that there are many families who are in a position they never in a million years planned to be in.
• 25:39
  Victor Nieves: They never thought that they would be in.
• 25:40
  Victor Nieves: This is not the dream that they had when they first got a positive pregnancy test.
• 25:44
  Victor Nieves: They didn't envision this part of it.
• 25:46
  Victor Nieves: What can we do to connect them with the right people so that they do get this quality care, so that they're not manipulated?
• 25:55
  Victor Nieves: We've heard so many stories.
• 25:56
  Victor Nieves: Here on the show, we've we've featured stories of parents who, in that moment of just uncertainty and confusion, and it's like you said, your head's spinning, it's like all you hear is buzzing or Charlie Brown, and you can hardly figure out what's up and what's down.
• 26:09
  Victor Nieves: And then you have a medical professional who says, hey, the answer is abortion.
• 26:13
  Victor Nieves: The answer is to terminate.
• 26:14
  Victor Nieves: That is a horrible situation you wouldn't wish on anybody.
• 26:17
  Victor Nieves: How can we, as the pro-life movement, how can we as the average person work to do better to connect people with actual care and not the manipulation and not the confusion?
• 26:26
  Victor Nieves: And like you said, to have that breath come up for air and be able to evaluate with a level head, with a calm mind and get connected.
• 26:33
  Victor Nieves: What do we do for those people?
• 26:35
  Dr. Robin Pierucci: Sure.
• 26:35
  Dr. Robin Pierucci: So the first thing is number one, permission to slow down.
• 26:40
  Dr. Robin Pierucci: Even though I don't care how many people are bludgeoning you with terminate, terminate, stop.
• 26:45
  Dr. Robin Pierucci: We need more information.
• 26:47
  Dr. Robin Pierucci: So there's two groups.
• 26:48
  Dr. Robin Pierucci: You've got some who grow in with value systems intact, permission to say to your obstetrician, I understand that you are legally bound by your medical association to offer me termination.
• 27:01
  Dr. Robin Pierucci: You can check that box.
• 27:02
  Dr. Robin Pierucci: You're done ever saying that word to me again.
• 27:04
  Dr. Robin Pierucci: And you take them off the hook.
• 27:07
  Dr. Robin Pierucci: Tell your doctor, that word traumatizes my heart.
• 27:10
  Dr. Robin Pierucci: Please do not ever offer that again.
• 27:12
  Dr. Robin Pierucci: Please write it in my chart so that every single doctor who ever sees me also does not ever have to say that word to me.
• 27:17
  Dr. Robin Pierucci: We're done.
• 27:18
  Dr. Robin Pierucci: There is no diagnosis that leads us to a conclusion that we're going to terminate this child.
• 27:24
  Dr. Robin Pierucci: And so that is the first thing.
• 27:26
  Dr. Robin Pierucci: Every parent has the ability to tell their healthcare team, genetic counselors, obstetricians, cardiologists, I don't care who you meet, we are not going to just intentionally destroy our own child.
• 27:38
  Dr. Robin Pierucci: So you have permission to say, yeah, okay, you've checked that box.
• 27:41
  Dr. Robin Pierucci: We're done with that conversation.
• 27:43
  Dr. Robin Pierucci: Now let's talk about what we can do.
• 27:45
  Dr. Robin Pierucci: The other thing that is massively important is prenatal testing often does not get good informed consent.
• 27:53
  Dr. Robin Pierucci: So often because it's become so easy.
• 27:55
  Dr. Robin Pierucci: It can be, it's a blood as simple as a blood test.
• 27:57
  Dr. Robin Pierucci: What's often not discussed, however, is that some of those really early tests, the one called cell-free DNA or NIPT, that people don't even know that what's gonna happen.
• 28:07
  Dr. Robin Pierucci: They think, oh, it's a gender reveal.
• 28:09
  Dr. Robin Pierucci: No, no.
• 28:09
  Dr. Robin Pierucci: If there is no diagnosis that could lead you to terminate your child, you can ask the LB, I don't want that.
• 28:16
  Dr. Robin Pierucci: We definitely should have an ultrasound.
• 28:18
  Dr. Robin Pierucci: I am not saying put your head in the sand because I want you to be able, if there is an issue, say there's a congenital heart problem, I want you to be able to, you know, talk about getting to a hospital that has the capability of intervening.
• 28:33
  Dr. Robin Pierucci: Results are better when you can be born at a hospital that has that kind of facility.
• 28:37
  Dr. Robin Pierucci: And sometimes that means reorganizing a lot of care.
• 28:40
  Dr. Robin Pierucci: So this is not about denial of good information.
• 28:43
  Dr. Robin Pierucci: However, not all information is equal.
• 28:46
  Dr. Robin Pierucci: And if it leads you to a spot where people are going to start, oh, if I know that diagnosis, I'm gonna refuse you medical life-sustaining treatment.
• 28:53
  Dr. Robin Pierucci: Oh no, no, hold on.
• 28:55
  Dr. Robin Pierucci: You can take back, you don't have to do that.
• 28:58
  Dr. Robin Pierucci: You can get a genetic evaluation at birth.
• 29:00
  Dr. Robin Pierucci: You don't have to have that.
• 29:02
  Dr. Robin Pierucci: And then, as one mom with trisomy said, when did I get branded the scarlet tea?
• 29:07
  Dr. Robin Pierucci: No, you don't have to.
• 29:08
  Dr. Robin Pierucci: You should get those uh like a 20-week anatomy scan.
• 29:12
  Dr. Robin Pierucci: If you have a family history where there's concerns, I am not against information.
• 29:18
  Dr. Robin Pierucci: Remember, medical excellence with compassion.
• 29:21
  Dr. Robin Pierucci: I just don't want one to get voted off the island given a prenatal diagnosis.
• 29:26
  Dr. Robin Pierucci: So those are two things that everyone can do walking in the door to your obstetrician, letting them know termination's not ethically appropriate.
• 29:35
  Dr. Robin Pierucci: It's not something I'm gonna ever want.
• 29:37
  Dr. Robin Pierucci: Please don't offer that to me.
• 29:38
  Dr. Robin Pierucci: And let's talk, slow down and ask about prenatal testing.
• 29:42
  Dr. Robin Pierucci: What does it mean?
• 29:44
  Dr. Robin Pierucci: You don't always have to get that.
• 29:46
  Dr. Robin Pierucci: Just so you know, in the background, ACOG, a number of years ago, in 2007, it used to be we only did prenatal testing on women who were at risk.
• 29:53
  Dr. Robin Pierucci: It got changed to all comers.
• 29:56
  Dr. Robin Pierucci: And you have to ask why.
• 29:58
  Dr. Robin Pierucci: And it just allowed more people to be offered termination earlier than what was happening before.
• 30:04
  Victor Nieves: Yeah.
• 30:04
  Victor Nieves: .
• 30:05
  Victor Nieves: Dr. Pierucci, to your first point of being you, you as a patient, being informed and knowing in advance that when you're head spinning, you can say, hang on, take a step back.
• 30:15
  Victor Nieves: I'm gonna think for a second.
• 30:17
  Victor Nieves: You know, it's sometimes when we go into a hospital, we think that we're in the presence of the president or something.
• 30:22
  Victor Nieves: We have to do whatever they say.
• 30:24
  Victor Nieves: That's not how that works.
• 30:25
  Victor Nieves: We can say, hang on, just a second.
• 30:27
  Victor Nieves: I'm gonna take a breath because I just got news I never anticipated and I don't know how to process just yet.
• 30:32
  Victor Nieves: I would also encourage couples to have some of these conversations in advance.
• 30:37
  Victor Nieves: And then once you've had those conversations specifically to the men, to the father, to the husband, whatever your relation is, to the woman that you're with who's going to be having this baby, my advice as a man to other men is take that off of her plate.
• 30:52
  Victor Nieves: She's got enough going on.
• 30:53
  Victor Nieves: The days of you going to war for your children begin before they're born.
• 30:57
  Victor Nieves: You need to be willing to be the one that steps in and says, respectfully, don't say that again.
• 31:02
  Victor Nieves: Respectfully, you've checked the box.
• 31:04
  Victor Nieves: I understand that you had to say that.
• 31:06
  Victor Nieves: That word's not said in this room again.
• 31:08
  Victor Nieves: We're not doing that.
• 31:09
  Victor Nieves: We are going to take a second to figure out what we are going to do.
• 31:12
  Victor Nieves: We'll get back with you.
• 31:13
  Victor Nieves: Be the man in the room who can step in in defense of your wife, your maybe it's a girlfriend, your child at that moment.
• 31:20
  Victor Nieves: Go to war for your family.
• 31:22
  Victor Nieves: And you have the right to.
• 31:22
  Victor Nieves: And not don't be a jerk to your staff.
• 31:25
  Victor Nieves: They're they're, you know, hopefully they're there to help you as well.
• 31:27
  Victor Nieves: But you know what you need in that moment.
• 31:30
  Victor Nieves: And you know what she needs in that moment.
• 31:32
  Victor Nieves: You should, you should know what she needs in that moment.
• 31:34
  Victor Nieves: And sometimes that requires saying, all right, I appreciate the input.
• 31:37
  Victor Nieves: We're not saying that again.
• 31:38
  Victor Nieves: We're going to move forward the way that we want to move forward.
• 31:41
  Victor Nieves: And so that's just my two cents.
• 31:42
  Victor Nieves: Maybe OBs won't always appreciate that, but I think it's very valuable as a couple to have those conversations in advance so that you can be a little bit more prepared, a little bit more equipped to push back when it needs to be done.
• 31:54
  Dr. Robin Pierucci: I could not agree more.
• 31:55
  Dr. Robin Pierucci: Yes, you have the right to defend your child.
• 31:58
  Dr. Robin Pierucci: And I find it it's like insult to injury to not only it's usually a surprise that you find out there's a prenatal diagnosis, and then within the same appointment, also be offered a termination when you're still reeling from the first sentence is to me unconscionable.
• 32:14
  Dr. Robin Pierucci: I mean, that's just wrong.
• 32:16
  Dr. Robin Pierucci: And so slowing down and other, you know, good resources to reach out to.
• 32:22
  Dr. Robin Pierucci: Honestly, if you get a specific diagnosis, um, such as groups that have really good organizations online, Down syndrome, spina bifida, there's national associations, trisomy 13 and 18.
• 32:35
  Dr. Robin Pierucci: When you see that there are groups of people living with this, has to make you pause, especially when you have families say, or the patients themselves later say, My life isn't miserable.
• 32:47
  Dr. Robin Pierucci: In fact, I like being alive.
• 32:49
  Dr. Robin Pierucci: I was talking to medical students, as we were teaching one day, we had just done a parent panel, and the parents had shared their stories.
• 32:57
  Dr. Robin Pierucci: And it was really brought in, we were doing these panels to talk about living with disabilities and living well.
• 33:03
  Dr. Robin Pierucci: And, but they were also telling their prenatal stories.
• 33:07
  Dr. Robin Pierucci: And this one medical student looked at us and said, honestly, I didn't even know you could live with this diagnosis.
• 33:12
  Dr. Robin Pierucci: And here he was hearing that this child was the light of the universe for this family and just cherished and thriving, not just getting by.
• 33:23
  Dr. Robin Pierucci: This child was thriving.
• 33:24
  Dr. Robin Pierucci: You know, in medical school, we are taught to sound like Eeyore.
• 33:28
  Dr. Robin Pierucci: This is terrible.
• 33:30
  Dr. Robin Pierucci: And we, instead of sounding like a depressed donkey, we need to kind of step back and go, no, there are ways to live.
• 33:37
  Dr. Robin Pierucci: And I'm not trying to minimize for all the parents, God bless you, who have medically intense kids.
• 33:45
  Dr. Robin Pierucci: That is not easy.
• 33:47
  Dr. Robin Pierucci: But I also know many of them who said, I wouldn't trade this.
• 33:50
  Dr. Robin Pierucci: I wouldn't trade my child's life.
• 33:52
  Dr. Robin Pierucci: There are days it's harder.
• 33:54
  Dr. Robin Pierucci: Not gonna hide that.
• 33:55
  Dr. Robin Pierucci: And we owe it to these families to support them.
• 33:58
  Dr. Robin Pierucci: How what do they need?
• 34:00
  Dr. Robin Pierucci: How do we have respite when they just need to go out for dinner and someone deal with whatever the other child needs at home or the rest of the siblings?
• 34:08
  Dr. Robin Pierucci: But I also hear from the same families, the other kids are better human beings.
• 34:12
  Dr. Robin Pierucci: They are better parents.
• 34:14
  Dr. Robin Pierucci: Gosh, I know a handful of the trisomy families, trisomy 13, who say, you don't understand.
• 34:19
  Dr. Robin Pierucci: This is my privilege to get to be the parent for this child, who, by the way, is one of the happiest people I know on this planet.
• 34:26
  Dr. Robin Pierucci: Once again, that's a successful parent.
• 34:29
  Dr. Robin Pierucci: It's not easy, but we need to look at how do we define success and how do we support each other to love each other well without making people have to be traumatized with looking back and going, I was made to be complicit in my own child's demise.
• 34:45
  Dr. Robin Pierucci: How do I live with that?
• 34:46
  Dr. Robin Pierucci: That's not fair.
• 34:47
  Victor Nieves: Well, Dr.
• 34:48
  Victor Nieves: Pierucci, it's a difficult topic in many ways, but I'm very grateful for people like you who help us to navigate this.
• 34:54
  Victor Nieves: Where can people go to see more from your work, but also to learn more about this topic?
• 34:59
  Dr. Robin Pierucci: So I can be reached at Fetal Concerns, where we have a free service called Navigating Fetal Concerns, where we walk with families who would like to continue the pregnancy after a prenatal diagnosis.
• 35:10
  Dr. Robin Pierucci: So that's I am, and I'm available, it's online, it's a virtual clinic.
• 35:14
  Dr. Robin Pierucci: We're available everywhere.
• 35:16
  Dr. Robin Pierucci: If you get a prenatal diagnosis, reach out because there's different palliative care services in your community, what's there locally, and talk to them.
• 35:26
  Dr. Robin Pierucci: I have found palliative care people sometimes are the glue between your other healthcare team and your own sanity because they listen differently to what your spiritual needs are, your physical needs are, all of those rolled into one.
• 35:41
  Dr. Robin Pierucci: So they can sometimes be wonderful advocates.
• 35:44
  Dr. Robin Pierucci: Sometimes they follow, if you've got a hardline obstetrician who only offers termination, they sometimes fall in line.
• 35:51
  Dr. Robin Pierucci: So, like anyone else you know, you need to meet them.
• 35:54
  Dr. Robin Pierucci: But there's so many local resources that it's really important to see what's there in your own community.
• 36:01
  Dr. Robin Pierucci: Because most of us haven't looked for that until we need it.
• 36:04
  Dr. Robin Pierucci: Why would we?
• 36:04
  Dr. Robin Pierucci: But these folks exist and happy to help connect people.
• 36:08
  Victor Nieves: Well, Dr.
• 36:08
  Victor Nieves: Pierucci, once again, thank you so much for joining us.
• 36:11
  Victor Nieves: It's always a pleasure to talk with you.
• 36:12
  Victor Nieves: To you are a listener, I encourage you to visit our website, lifeissues.org.
• 36:16
  Victor Nieves: You can learn more about palliative hospice, about all issues that are facing life.
• 36:21
  Victor Nieves: Again, that's available at lifeissues.org.
• 36:23
  Victor Nieves: Be sure to tune in next week for another episode of Life Defenders.