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Butterfly Program: Through Loss, Toward Hope · UF Health MedEd Cast

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  Melanie Cole, MS (Host): Welcome to UF Health MedEd Cast with
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  UF Health Shands Hospital.
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  I'm Melanie Cole.
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  And today, we're highlighting The Butterfly Program:
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  Through Loss, Towards Hope.
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  Joining me is Dr.
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  Mehmet Genc.
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  He's the Medical Director for The Butterfly Program and a Professor
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  in the Department of Obstetrics and Gynecology at the University
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  of Florida College of Medicine.
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  Dr.
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  Genc, thank you so much for joining us today.
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  Please start by telling us a little bit about the emotional, psychosocial, and
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  social consequences of pregnancy loss.
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  Dr. Mehmet R. Genc:
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  First of all, I would like to thank you for giving me the opportunity
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  to talk about our Butterfly Program that we started in 2020.
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  The reason we started this program was that we have been long aware of the fact
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  that pregnancy loss and adverse pregnancy outcomes is a topic that is relatively
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  under-cared for in our medical system.
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  And what I mean with that is that, when the patient leaves the hospital after an
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  adverse outcome, including a pregnancy loss, the care kind of stops there
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  First, in many cases, the cause of the adversity is not immediately addressed
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  because some of the test and lab results are not readily available to us at
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  the time of the patient's discharged.
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  And second, the family does not necessarily have the emotional
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  and psychosocial support.
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  They're discharged from the hospital and they are left on their own.
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  And the third thing is that, when the patient and the family comes
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  back to the healthcare provider, this healthcare provider may not necessarily
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  have all the tools to investigate and explain to the patient what happened.
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  And this also brings the problem that if you don't know what happened,
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  what caused the adverse outcome, you cannot really provide an answer how
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  you can prevent it the next time.
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  So, to address these issues, we came with a pregnancy loss program or pregnancy
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  adverse outcome evaluation program.
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  And at first, we didn't have a name for it.
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  So, the Butterfly name actually came afterwards while we were actually
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  trying to find a more easily quotable name that would capture the
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  essence of what the program offers.
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  So, the key components of this program is medical understanding, evaluating
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  what happened, and explain the findings.
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  Grief and emotional support, recognizing the loss, and
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  responding to each family's needs.
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  Psychosocial support, helping families address practical and
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  personal challenges that follow.
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  And then, the final piece is the future pregnancy planning, discussing the
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  recurrence risks and individualized care for those considering another pregnancy.
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  So, the Butterfly Program brings medical expertise and compassionate
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  support together for families experiencing pregnancy or newborn loss.
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  We want families to understand the information available, feel
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  supported, and know what comes next.
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  Melanie Cole, MS: Well, thank you so much, Dr.
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  Genc.
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  Now, I'd love for you to expand a little on the role of the Butterfly Program
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  at UF Shands in providing coordinated multidisciplinary care that extends from
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  hospitalization through recovery and preparation for subsequent pregnancies.
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  You're speaking to other providers.
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  What can they, as counseling their patients, let them know what to expect
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  from the Butterfly Program and your team?
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  Dr. Mehmet R. Genc:
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  So, a patient is referred to us because of an adverse pregnancy outcome.
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  Obviously, some of the things that we would offer to the patient, like grief
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  and emotional support, which we offer this while they are hospitalized, and
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  we make sure that they are referred to appropriate healthcare providers.
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  Of course, we may not be able to timely offer this because we typically see these
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  patients several months after the event.
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  And the reason we would like to see these patients several months after the
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  event is that we would like to get all the relevant medical studies completed.
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  These are histopathological evaluation of the placenta, an autopsy if the patient
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  consented, and any genetic results.
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  And some of these studies take a long time, so that's why we want to bring
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  these patients back several months.
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  And we also want to give them some time to emotionally settle after a
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  major trauma so that they can talk and they have the strength and the
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  willingness to talk about these things.
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  Once we see the patient, it's very important, as I said, to
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  have all the relevant records.
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  And that includes the antenatal records, what happened at the time when the
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  patient presented to the hospital, what were the findings and the events that
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  occurred in the hospital, and also all the relevant lab tests, studies, as
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  I said, histopathological evaluation of the placenta, autopsy results,
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  genetic results, and we review that.
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  And it's helpful to get these records before we meet the
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  patient, because this is, like, almost a detective investigation.
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  We have to bring the pieces together, and sometimes we have to reach out
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  to experts like the pathologist, like a pediatric surgeon to explain or to
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  investigate whether these findings are pointing to a certain direction.
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  So, rather than doing this after we meet the patient, we prefer to do it
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  before we meet the patient based on our review of the records, so that
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  when we meet the patient, we have much concrete answers to provide.
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  So, the important goal here is to provide the patient a understanding
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  of what happened, what went wrong.
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  And of course, there are cases where we cannot explain.
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  And in those cases, probably, the odds of recurring is relatively small.
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  However, in majority of the cases, we have a pretty good understanding of
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  what happened, what led to that result.
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  And based on that, we can provide not only some closure, but also give the
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  patient and her family what is the recurrence risk of this happening again.
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  And that is very important because when these patients come
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  to us, they have no idea if they have to go through this again.
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  They are devastated by this.
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  But they don't know what the risk of the same thing happening again.
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  And then, the other part is how can we manage the individualized care
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  for the future pregnancy so that we minimize the risk of recurrence.
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  And that depends on the pathology, that depends on the specific clinical
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  characteristics of the patient, and that requires a very in-depth discussion.
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  And one solution does not fit all.
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  What I mean with that is that, you know, it is very different, for example,
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  that someone who had no children, who conceived through an IVF is very
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  different than a mother who had four children and perhaps who doesn't want
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  to take the same recurrence risk.
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  So, we really individualize the counseling and the care we would provide to
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  this patient in the future pregnancy.
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  Melanie Cole, MS: Such an important program, Dr.
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  Genc.
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  Really, the compassion that it must take to work with these families.
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  So as you're telling us about the importance of identifying those
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  causes through the evaluation and the tests and the contributing
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  factors, and then communicating those findings compassionately
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  to patients and their families.
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  When you're speaking about that information that you've obtained, how
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  does that inform that individualized care and risk reduction strategies
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  in the future pregnancies?
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  Tell us how you work with these families going forward after the loss.
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  How long is the follow-up, and how are you helping them directly?
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  Dr. Mehmet R. Genc:
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  Let me give you a clinical example.
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  Cervical insufficiency.
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  Basically, it's the cervix, which is the lower portion of the uterus, which
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  almost acts as a gateway to the uterus.
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  And in some women, the cervix is mechanically not strong to hold
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  the pregnancy, and this leads to either early pregnancy loss or
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  extreme prematurity, which may be associated with neonatal death or
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  serious prematurity complications.
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  So typically, these patients, for the first time, they present and
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  without any warning either perhaps sometimes we can see that their cervix
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  is shortening on the ultrasound.
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  But in many cases, they present with their cervix dilated, and subsequently,
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  their membranes rupture or they go into labor and the pregnancy is delivered.
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  Now, in the subsequent pregnancy, if this issue is not addressed,
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  the risk is still there.
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  And we often see these patients once they get pregnant again, when we don't have any
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  chance to discuss the recurrence rate and how we're going to approach this problem.
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  There are different ways of approaching the problem, and
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  one is to place a cerclage.
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  There are different ways of placing a cerclage, and one is
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  placing an abdominal cerclage.
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  However, abdominal cerclage is placed in the safest manner
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  before the patient gets pregnant.
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  So, it's very important for that reason to discuss these various options
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  before the patient gets pregnant.
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  For example, in the case of an abdominal cerclage, where we place the
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  cerclage through a little incision in the abdomen, high up in the cervix.
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  As I said, this is done prior to pregnancy.
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  And what we do is that after establishing a diagnosis of cervical incompetence,
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  we refer these patients to a minimally invasive surgery specialist.
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  And the cerclage is placed laparoscopically before the pregnancy.
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  And then, we discuss, of course, the advantages and disadvantages
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  prior to placing such a cerclage.
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  And then, we advise the patient to get pregnant.
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  So, as I tried to explain in this example, the window of of opportunity is
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  actually before the patient gets pregnant.
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  And there are many examples of this.
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  Diabetes, hypertension.
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  So, it's very important that these issues are discussed prior to pregnancy,
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  prior to the planned pregnancy
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  Melanie Cole, MS: Yes.
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  Thank you so much for telling us about all of that.
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  Do you have any final thoughts for referring physicians?
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  What you would like them to take away from this important episode and the Butterfly
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  Program at UF Health Shands Hospital.
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  Dr. Mehmet R. Genc:
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  What I would like them to know is that it is really our mission to
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  give these patients a closure and help give them hope for the future.
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  And this requires a multidisciplinary team, an environment where you have to dig
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  into the details and time to synthesize a narrative that can both explain
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  what happened and also lead to a plan.
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  And in many clinical scenarios, many physicians do not have these resources.
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  And we do.
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  So, I think, it would be a huge service both to our referring physicians, but
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  especially to their patients to get such service from the Butterfly Clinic.
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  And the other thing is that we collaborate and follow together
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  with our referring physicians, these patients, after they get pregnant.
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  So, it's not like, we take the ownership of these patients,
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  but we make our recommendations.
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  We perhaps do or recommend certain treatments, but we usually follow these
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  patients together with our referring physicians once they get pregnant.
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  Melanie Cole, MS: Thank you so much, Dr.
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  Genc, for joining us today and telling us about the Butterfly Program.
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  Thank you again.
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  And to learn more, you can visit ufhealth.org/specialties/obstetrics-and-gynecology.
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  You can also learn about other healthcare topics at innovation.ufhealth.org.
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  That concludes today's episode of UF Health MedEd Cast with
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  UF Health Shands Hospital.
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  I'm Melanie Cole.