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A New Path Forward: The Utah Pregnancy After Loss Program

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A New Path Forward: The Utah Pregnancy After Loss Program

May 17, 2024

In the wake of pregnancy loss, finding supportive care can be transformative. Kirtly Parker Jones, MD, speaks with Bob Silver, MD, about the Utah Pregnancy After Loss Program, designed to support families during such difficult times. Learn about the program's holistic care options, from medical treatment to emotional support, ensuring that each family's journey toward healing is met with understanding and expert care.

Episode Transcript

Dr. Jones: In all my years as an OB/GYN the only time I wept in the delivery room was when delivering a stillborn baby at term. It's a profoundly traumatic occurrence that is not especially rare. I'm Dr. Kirtly Jones from obstetrics and gynecology at University of Utah Health and we're going to talk about a new program at the University of Utah that will help women and families suffering from pregnancy loss. And with me in the virtual Scope studio is Dr. Bob Silver Chairman of Obstetrics and Gynecology at the University of Utah and an international expert on stillbirth and pregnancy loss. He's going to tell us about a new program at the University of Utah called the Utah Pregnancy After Loss Program. Thanks for joining us Dr. Silver.

Purpose and Benefits of the Program

Dr. Silver: You bet. We're really excited about the launch of this program. We've been performing many aspects of it but formalizing the program will allow us to do a much better job of caring for patients who have suffered stillbirth recurrent pregnancy loss or other pregnancy complications. This program can provide the best possible medical care for these patients but even more importantly it can provide the best possible emotional support and mental health care for these patients.

Families that have suffered pregnancy loss as you know really experienced trauma. And normally when you have a baby you're excited about it and you tell all your friends and your family and you look forward to having ultrasounds and doctor's visits. But when you've been through a loss or a really complicated pregnancy it really flips things around and you become afraid and scared that you're going to hear bad news. And instead of being excited to have an ultrasound you become scared to have an ultrasound. And so we really want to provide the best possible emotional support for these families in addition to the medical care that they need.

It's really helpful to have more frequent visits and sometimes that can be tricky with the American medical system. But this clinic will allow patients to have all the visits that they need both for emotional support and medical care and have all the ultrasounds that they need again for emotional support as well as medical care without increasing their costs.

Emotional and Medical Support Provided

Dr. Silver: There's also an opportunity to have a multidisciplinary team and to have mental health care workers which is often a huge part of the care that's required and also have nurses and MAs and sonographers who have been through additional specialized training in order to provide the best emotional support for parents and to not say things that that make folks feel uneasy or stressed but to communicate and say things in a way that's respectful and supportive. So we're really excited about the clinic.

One other aspect that I'm also really excited about is it can bring patients together who have experienced the same thing. And so families who have been through this can really support each other in a way that people who haven't experienced this can't really relate to in the same way. So many of these families have been incredible emotional support systems for each other and can really help each other get through the process.

Dr. Jones: Right. Well it's not infrequently in the past that people who've had either a stillbirth or recurrent pregnancy loss their physician or their care team might say "This is really hard but you'll get over it and just try again." And that's really not what they're looking for. That's not going to help.

The concept of trauma informed care or patient-centered care is exactly where you're focusing here. Each family each woman is going to have unique needs based on her background and her other traumas. So the fact that you can deal with all of that is just fantastic Bob. It's really amazing.

Dr. Silver: Well I appreciate your saying that and I think both of those points are really important to stress. So one is for whatever reasons pregnancy loss is not valued and honored in the same way that other tragic things or other human diseases are honored. It's hard to place a relative qualitative value on these things. But certainly families that have suffered pregnancy loss don't feel heard and don't feel like their loss is valued or respected and that they don't get the same support from the community that people experiencing other medical problems receive. And that's something that advocacy groups are working to try to rectify and as a medical system we're trying to do a better job.

The second thing is everybody is different and so one size fits all doesn't always work with these kinds of things. We really want to work with families to do whatever it is that helps them the most emotionally. So philosophically and we also talk to families about this because everybody is so fundamentally different psychologically if we're doing something and it makes you feel better and less anxious and less stressed and more secure then we'll keep doing it. If we're doing something and it's making you feel more anxious and less secure we'll quit doing it. And so we kind of have to work with each family to figure out what the best approach is.

Individualized and Culturally Sensitive Care

Dr. Jones: Yeah exactly. And of course I know that members of your team have done consultations for women all over the world over the past many years because you're all experts in this field internationally. So you've got people from different cultures who have different ideas about what stillbirth or preterm birth or recurrent pregnancy loss really means within their culture. And sometimes you have to ask a lot of questions and not say very much until you know what people need from you yeah?

Dr. Silver: That's a great point. We're really trying to be smarter about individualized care and also respecting different people's backgrounds and beliefs and cultural wishes. It's really an active area of research and it's something that we're really learning a lot about.

In the context of stillbirth a really good example would be an evaluation for causes of stillbirth. And ideally we would do a series of investigations to try to figure out why stillbirths happen. But many families don't want to do that. They feel like the evaluation won't bring their baby back and won't do any good. And they also may have a set of personal beliefs where they feel uncomfortable with things things like genetic testing or things like autopsy.

We're learning that if you sit down with families and have a conversation with them and listen to what their worries are often it's possible to do an evaluation and often they have some beliefs that may or may not be true. Or often it's possible to work with them so that you can honor their beliefs and the things that are important to them and still obtain a lot of information. It's really different for every individual but especially for folks from different backgrounds. We're working with some of our qualitative researchers to study that better and to help families work through the decision-making process and to really make decision aids that are culturally specific and really allow for individual variation to help each family work through the things that are most important to them.

And so we're really trying to be better about this. It's something that we always have to continue to get better at. We're nowhere near where we need to be but I like to think that we're better at it today than we were say 5 or 10 years ago.

Expansion and Future Aspirations

Dr. Jones: Yeah. Well how far away will this clinical care net stretch for people far away? This is not a service that's available at the hospital down the street or it's not probably available even in the state next door? So how far can people be away for this service?

Dr. Silver: Well anybody can contact us from anywhere in the country or anywhere in the world and a lot of people do. We work with people remotely and we're also working with people through telehealth and we can also collaborate with their local physicians so that we can do consultations and give advice but also can work with people remotely.

I take care of many patients from many parts of the country and even many parts of the world. So we can do this in collaboration with their local physicians. However it's our goal and aspiration to try to have similar clinics pop up throughout the United States. And this is modeled on something called the Rainbow Clinic. The Rainbow Clinic is very similar clinic that was started in Manchester England by a physician named Alex Heazell who's one of my colleagues and research collaborators. We visited this clinic in Manchester with the hopes of bringing this clinic to the United States. And we've now modeled this on that clinic. We're working with the folks in Manchester to really have an international collaboration of clinics trying to do the same thing.

So there are recently started clinics similar to ours. There are two in New York City one at Columbia and one at Mount Sinai. But our goal is to try to get these clinics into as many states in the U.S. as possible and we're taking all of the logistical and political steps to initiate that.

Dr. Jones: Well this is such an important service. Diagnostic testing that people will be willing to do for their pregnancy that they lost and understanding what might have caused a medically complicated pregnancy and the support around the one pregnancy they did lose or several that they lost but you also do this work for their future pregnancy. If they become pregnant again if that's a choice that they make you're there for them to help guide them through that pregnancy as well.

Dr. Silver: You bet. Again both of those things are critically important. Even if patients don't decide to have another pregnancy and sometimes they don't they'd really like to find answers for what happened. And just the act of trying to find answers really provides healing. But if they can find a reason it can really help bring closure and peace and help the bereavement process. Like I said even the act of trying can be emotionally therapeutic for folks. And then a vast majority of families do want to at least consider whether or not they want to have another pregnancy and in many cases they do. And so first if we can find a reason for what happened then we may have certain medical interventions or strategies to improve outcome in the next pregnancy. People certainly want to do that and they want to know what their options are. Then doing those interventions and trying to have the best possible outcome is also therapeutic. People don't want to have any regrets and feel like they didn't do everything possible to have the healthiest baby.

Dr. Jones: Well this is an incredibly important team that you put together and this service can help women throughout Utah and throughout the intermountain west and farther away than that. Thank you for joining us Dr. Silver. And listeners if you or someone you know has suffered from pregnancy loss from a stillbirth recurrent miscarriage or a medically complicated pregnancy please reach out for help. You can call the Women's Health Services at the University of Utah Health at 801-213-2995. Thanks for listening to The Scope.