Advancing Fetal Surgery with Aimen Shaaban, MD
Advances in fetal imaging, genetic diagnosis and other innovations have made it possible to screen for congenital abnormalities early on in pregnancies. Such advances provide opportunities for specialists at The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children's Hospital of Chicago to treat and sometimes cure a condition before birth. The Chicago Institute for Fetal Health performs more than 3,500 consultations each year on a wide range of fetal conditions. In this episode, Aimen Shaaban, MD, a fetal surgeon and director of The Chicago Institute talks about the breadth of services available, from pre-birth counseling to complex fetal surgeries.
“Could we do the operation that we do after birth in mid-gestation, cover the spinal cord, repair it, and then hopefully the baby would have a better outcome? And that, through our studies, has shown that is indeed the case. And it's very effective.”
Aimen Shaaban, MD
Director, The Chicago Institute for Fetal Health; Attending Physician, Pediatric Surgery, Lurie Children's Hospital
Professor of Surgery, Northwestern University Feinberg School of Medicine
- Integrating a wide array of specialist services within a single center, The Chicago Institute for Fetal Health serves patients with complicated pregnancies that often require serious treatment including fetal surgical interventions. [00:01:41]
- With empathy as a guiding principle, The Chicago Institute is supported by a diverse team of over 60 faculty members as well as nursing teams with 30 to 40 years of obstetrical and neonatal health care experience. [4:52]
- The most common conditions requiring fetal surgery are those related to complications in identical twinning, including selective fetal growth restriction or twin-to-twin transfusion syndrome. [00:08:52]
- Spina bifida is another commonly treated disease in which the spinal cord is exposed during fetal development. Repairing this condition in-utero can improve neurologic function and preserve motor function, and also reduces the risk for other conditions like hydrocephalus or Chiari malformation. [11:57]
- From 2002 to 2011, researchers conducted of the largest clinical trials of its kind for fetal surgery, called the Management of Myelomeningocele Study (MOMS), which showed improved health outcomes with fetal surgery in cases of spina bifida. [14:00]
- Dr. Shaaban has dedicated the last 26 years to studying in-utero stem cell and gene therapies, specifically, the study of fetal immunology. Treating diseases that exist at a cellular level, such as sickle cell disease, thalassemia, cystic fibrosis and other cellular diseases, very frequently relies on cell transplantation. The goal is to treat such diseases before birth, and before they cause irreversible damage. [18:29]
- Given the center’s focus on innovation, Dr. Shaaban foresees open fetal surgical procedures will transition to minimally invasive surgeries in the next few years, and eventually, to therapies that can be performed without making a single incision. [22:00]
- The Chicago Institute for Fetal Health
- Management of Myelomeningocele Study (MOMS)
- Fetal Surgery for Spina Bifida
Erin Spain, MS [00:00:15] This is Precision: Perspectives on Children's Surgery from the Ann & Robert H. Lurie Children's Hospital of Chicago. I'm your host, Erin Spain. On this podcast, we introduce you to surgeons at one of the country's most renowned children's hospitals to find out how they're transforming pediatric medicine. Advances in fetal imaging, genetic diagnosis and other innovations have made it possible to screen for congenital abnormalities early on in pregnancies, opening a window of time for the specialist at The Chicago Institute for Fetal Health at Lurie Children's to counsel families, treat and sometimes cure a condition before birth. The Chicago Institute for Fetal Health is now performing more than 3500 consultations each year on a wide range of fetal conditions. Dr. Aimen Shaaban, a fetal surgeon and director of the Institute, joins me today to talk about the breadth of services available here from pre-birth counseling to complex in utero surgeries. Welcome.
Aimen F. Shaaban, MD [00:01:24] Thanks for having me.
Erin Spain, MS [00:01:25] The Chicago Institute for Fetal Health at the Ann & Robert H. Lurie Children's Hospital of Chicago opened about six years ago with you as the inaugural director. Explain the institute to me and how it's really rapidly grown since 2017.
Aimen F. Shaaban, MD [00:01:41] The Chicago Institute for Fetal Health is a center for patients with complicated pregnancies who have a diagnosis that may affect their newborn in a significant way and rather than place them in between multiple hospitals and multiple offices, we bring it all together here in one space within The Chicago Institute for Fetal Health. Our patients are typically young patients with their pregnancies that are affected with a new diagnosis, and they need help. They need help from people who have expertise, have empathy and can get it done, start to finish. And that's what we provide here at The Chicago Institute for Fetal Health.
Erin Spain, MS [00:02:12] Tell me about why this was started at the Ann & Robert H. Lurie Children's Hospital of Chicago, why this is such an ideal place to have a center like this and how you were able to grow the institute.
Aimen F. Shaaban, MD [00:02:23] It's the need in Chicago. Chicago's a major city, and it's a city in my mind, like no other city. But it did not have a center with these capabilities, with this kind of care, and other cities in the country, in the world, other major centers essentially have had this type of care. So it was the gap in this care and the need for this kind of leadership regionally to provide access for patients to the highest level of prenatal care, whether it be fetal intervention, fetal surgery, or coordinated, well-executed, integrated care with good communication and collaboration to provide the best outcome for the patients. That's what the need was, and that's the target we were aiming at. And I think we've hit it. The quality of the care that we provide and the folks that are committed, they're mission-driven, are the reason the center has grown. I think it's grown substantially because of the quality of what we do, and we ensure patients have an experience that's their own. It's centered around them. It's designed around the patient and the people that are here. They have the patient's best interests in mind from start to finish. We try not to leave any gaps in our patient experience here at The Chicago Institute for Fetal Health.
Erin Spain, MS [00:03:25] You mentioned Chicago. There was a need for this in Chicago, but people come from all over the Midwest and really all over the country for your services.
Aimen F. Shaaban, MD [00:03:33] The goal here was to start locally and think about the global impact. And our goal is not to stop at providing regional care. Our goal is to lead the world in this area. And that takes time. It takes innovation, it takes lots of hard work. But we're getting there and we really see a broad array of patients from pretty much everywhere in the United States and some patients internationally.
Erin Spain, MS [00:03:52] You mentioned the word innovation. Fetal therapy and fetal surgical interventions have been called some of the most successful stories of innovation in history. Explain the role that innovation plays in the work that your institute does every day.
Aimen F. Shaaban, MD [00:04:06] You know, there's nothing quite like a good operation or procedure to change an outcome for a patient. Nothing quite like it. I mean, we all don't want to have operations, we don't want to have surgery. But when we have a real problem, we want it fixed. We want it fixed, and we want to get back on track with our lives. So a good fetal operation with an innovative mindset and innovative creativity to change the outcome for that patient, but at the same time not causing more trouble or distress for the mother who is the patient here and her fetus is the one that receives all the benefits. And there's nothing quite like a good innovative fetal procedure in changing that outcome.
Erin Spain, MS [00:04:41] What does your team do to make these patients and families feel good about this experience and have as good of experience as they could possibly have during what is a very fragile time?
Aimen F. Shaaban, MD [00:04:52] That's the crux of it all. You know, it starts with empathy. Empathy for these patients who have a situation that is one of life's most difficult times. And knowing that these are young families, patients that have been healthy their whole lives and they really don't know much about health care. They've never had to, in complex health care at least. And now they're knee deep in it and they're struggling to find a way forward, as everyone would in that situation. And what they have is a group of folks that are absolutely 100% committed to the best possible outcome for them. We have nursing teams with 30 and 40 years of obstetrical health care experience, and we have a neonatal experience and expertise in surgery. We have over 60 faculty across the gamut of women's and children's health care focused on that particular goal. They'll find empathy. They'll find a knowledge and expertise that's unique and they'll find a commitment from our hospital, Lurie Children's and the Northwestern Medical Campus as a whole, to the care and the outcomes of these patients that we will take down any barrier that limits their access, limits their ability to just focus purely on the quality of their care and making the toughest decisions that any of us can make in our lives.
Erin Spain, MS [00:05:59] I think it's important to know that you have done this in other places, you are an expert, that you have built and worked in centers like this before. And I'd love for you to tell me a little bit about your background. How did you get into this very specialized field? Tell me your story.
Aimen F. Shaaban, MD [00:06:13] All of us as we sort of sort through our careers, we're looking for inspiration. Inspiration that guides us and guides us throughout the fulfillment that we are all yearning for in our careers. I met someone who, my mentor eventually, and he told me about what he does, and I initially was very dismissive. I couldn't believe he was telling the truth. I honestly didn't realize that we could do such a thing, that we were able to operate and do procedures and treatments on the fetus inside the mother. But then, as I learned more and more about it, about the ideal supportive nature of the fetal environment in allowing the fetus to heal, recover and get better, as opposed to the disease process, which is taking that away from the fetus and actually taking away options for the future as it slowly damages organs and impairs development. I saw this as a really amazing opportunity to mix what I love, which is surgery and surgical intervention, with science, philosophy and just good old fashioned patient-to-physician care and caring for patients that are really in tough spot. So that inspired me greatly. And I pursued it. And I have never, ever looked back, ever. The inspiration from that point forward has always come from the people around me, my team, and most importantly, the patients I care for. I see them as my inspiration, the way that they are resilient, the way they seek out care and make the toughest decisions. They're just looking for a partner in that process, and we try to provide that.
Erin Spain, MS [00:07:35] That sort of disbelief or wonder, amazement that you first had when you heard about fetal surgery. Is that how a lot of patients and families feel as well when you explain to them how you're going to proceed to operate on the fetus?
Aimen F. Shaaban, MD [00:07:49] A lot of families come here still just kind of wondering what in the world are we going to do and how does this get done and can we actually do this? We try not to be dramatic about what we describe because we're talking about human lives in their lives and try to be realistic, accurate, scientific and compassionate, blending that all together in a way that the patients can understand because it's really about balance of risks, risk for the mom, and then the benefits for the baby and risks to the baby as well. And getting patients to slow down a bit, try to feel comfort in the environment that they're around, that they're supported, and then to be able to listen and learn. At the end of the day, an educated patient is the best person to make the decisions about what's best for them. Patients come to us with varying degrees of life experience and medical experience, and we need to get to know them a little bit and be able to communicate with them in a way they can understand, sometimes in the language that they understand and in the culture they understand. And then once we've achieved that, then we can sit together with them and make the best decisions together for them.
Erin Spain, MS [00:08:44] Tell me about the types of conditions that you most commonly treat with fetal surgery. What are you seeing when these patients come in?
Aimen F. Shaaban, MD [00:08:52] The most common condition that we deal with here on a regular basis that may need fetal surgery is complications that relate to identical twinning. We have some conditions in which there is an identical twin where there's one placenta shared between two identical twins. Normally you have a placenta that is one placenta for each baby, and they balance the circulation of blood and nutrition to each baby so that they grow well. When you have one placenta shared between two babies, you are now asking the placenta to do enormous balance between the two. And sometimes it just doesn't happen correctly. Sometimes the balancing networks of blood flow are imbalanced after the babies start to grow. Sometimes they're that way from the beginning. This creates disorders in which one baby is sometimes not growing well, is very sick. It's something called selective fetal growth restriction, and the other baby is doing well. Or it creates a problem where both babies are sick. One baby's blood pressure is very low, the other baby's blood pressure is very high. And they're having what's called twin-to-twin transfusion syndrome that creates risk for both babies. In either case, the problem is happening in the placenta, in developing the placenta, and the way the networks of blood flow are balanced or imbalanced for both babies.
Erin Spain, MS [00:09:59] So how often are you doing surgery? How many of these procedures are you working on?
Aimen F. Shaaban, MD [00:10:03] Every year we'll see probably 150 to 200 referrals for fetal surgery and about a third of those pan out to needing fetal surgery. We see many consultations, about 3500 consultations per year. Only about 150 or so are really, truly surgical candidates and really drills down to a handful of patients. The majority of patients that we see, they don't have the need for fetal surgery. The condition never gets severe enough or we don't have the ideal operation available to make things better. For example, in the case of twin transfusion syndrome, we see about 120-150 of those patients per year alone. When we take them to the operating room, our goal with twin-to-twin transfusion is to separate the circulations between the babies. One baby is getting too much blood flow or blood pressure, the other one has too little. And our goal is to separate the circulation so that balance can be restored. And in doing so, we effectively cure the disease at its source and we have pretty darn good outcomes as a result of it. Good outcomes not just in the procedure, but actually in the outcomes for the pregnancy and the babies long term. And that's the goal.
Erin Spain, MS [00:11:05] When is the ideal time to do that procedure? What time during the pregnancy?
Aimen F. Shaaban, MD [00:11:09] The treatments for twin-twin transfusion can be done anytime from about 15 weeks or so, gestation, all the way up until about 28 or 29 weeks of gestation, depending on the severity and the particular situation. It's a big range. Obviously, the babies at the earlier gestation usually have more severe disease and they're obviously much more fragile. Babies at the other end of the range are bigger and are closer to delivery as an option. So the disease process there, we need to keep that in mind that those babies are very close to potentially being delivered as another option as opposed to fetal surgery. No one wants to have a baby at 28 weeks or twins at 28 weeks. So a fetal surgery, a small procedure under local anesthetic and an overnight stay in the hospital can change that dynamic and lead to healthier twins closer to term. And that may be the balance that makes sense for that patient.
Erin Spain, MS [00:11:55] Describe some of the other procedures that you do.
Aimen F. Shaaban, MD [00:11:57] One of the other more common procedures that we do is fetal surgery for treatment of spina bifida. Spina bifida is a disease in which the spinal canal is actually open and the spinal cord is exposed during development. And it happens at a very early gestation around three or four weeks of gestation before a patient ever knows that she's pregnant. That's why patients thinking about becoming pregnant are instructed to take folic acid as part of their prenatal vitamin supplements in anticipation of becoming pregnant. It provides protection even before the patient knows that they're pregnant. But that develops during pregnancy and that can create significant neurologic complications, problems with paralysis in the legs, hydrocephalus, accumulation of fluid in the brain, and complications that can last a lifetime. These complications are not corrected by this surgery that we do after birth. The surgery we do after birth, very frequently the damage has already occurred. And really our goal is to try to prevent further damage. But because of these lifelong complications, the question came up, can we treat this more effectively in utero? Could we perhaps treat a disease that didn't just start and end at three or four weeks of gestation, but a disease that's actually progressing in utero that's causing progressive neurologic damage. Could we do the operation that we do after birth in mid gestation, cover the spinal cord, repair it, and then hopefully the baby would have a better outcome. And that through our studies, has shown that is indeed the case and it's very effective at doing that. Repair in utero can improve neurologic function in the legs and preserve motor function, allowing the kids to ambulate or walk independently twice as often as compared to if they didn't have the fetal surgery. It also reduces the risk for hydrocephalus or the need for shunting to decrease the accumulation of fluid on the brain. It cuts that risk in half and improves in almost every situation, something called the Chiari malformation or hindbrain herniation, where the back of the brain, the cerebellum, will actually sink into the spinal canal, and in almost every patient that's improved. Those things can only happen with fetal surgery. They don't occur with standard postnatal or after birth surgery.
Erin Spain, MS [00:13:56] That's fascinating. How long has that surgery been taking place?
Aimen F. Shaaban, MD [00:14:00] The conceptual treatments began in the mid-nineties, and by the late nineties we were starting to do this in patients. And then around 2002 we started a clinical trial, the largest of its kind for fetal surgery, one of the largest clinical trials ever performed from the NICHD. And that trial was called the MOMS Trial, Management of Myelomeningocele Study. And that trial was started in 2002 and it finished in 2011. And that study, the MOMS study, showed us that those results, that outcomes were better with fetal surgery. It showed a great hope for treatment. It also showed us that there are risks and complications and there are great risks for the patient that need to be balanced. And we've never lost a mom. We've never had a long-term complication. But there are risks to the mom and the baby. They have to be considered in balance with what we do to treat this disease before birth. So the natural evolution of care has been that we provide the same care, effective care for the baby, and at the same time, try to reduce the risks for the mom. So we've transitioned from open fetal surgery where we create a larger incision in the uterus to now minimally invasive surgery, fetoscopy, where we use little pinholes, maybe eighth of an inch openings in the uterus to do this operation, three of them. And then we do the operation with small instruments and we're able to do the same operation. And the risks to the mom are significantly better. The open operation requires the patient to have cesarean delivery subsequently for the rest of her reproductive life, and then the fetoscopic operation avoids that altogether. The only need to have a cesarean would be just as any mother would need to have a cesarean for breech delivery or such. But the risks are better, and we're always looking to innovate and improve going forward.
Erin Spain, MS [00:15:39] You've said a couple of times that you have the best team, that your team is really the best out there, and that comes from the moment people walk through the door from the front desk until they're in the operating room. How do you create a culture like that where patients feel so well taken care of, like they're the only patient that matters that day? How do you do that?
Aimen F. Shaaban, MD [00:16:01] You know, I wish I could take credit for these individuals. I will tell you, I am the most fortunate person on the planet to work with this group. And I always tell them, each one of them, that the job finds them, that they are all mission driven, they are inspired by the need and the care and the opportunity to care for these patients. And the trust that they put in us unequivocally brings out the best in us, even before they even arrive. When they're just looking for care, they send an email or they make a phone call to have somebody answer the phone or an email and just say, "Hey, you know, good morning. We got it. We're with you. We understand what you're going through. And we are here and we have a system in place. And you will be speaking to individuals that are so experienced and not just experienced in the how to, but in the how do we get you through this? How do we partner with you?" Now, some patients don't have a lot of support, don't have lots of family. Those times they need us to function as their supportive people, supportive family and these individuals that work here, their goal is the best possible outcome. And Lurie Children's has provided that environment. It's a remarkable thing to ask a hospital to think in the most ideal state, especially nowadays with so many challenges in health care. Take any barrier away, to take out of the path of the patient and ensure that we have the best possible people on the front line for the care of these patients. That partnership, that trust from top to bottom, that goes right back to the patient. That's the reason the folks here are driven and why they are committed to these patients. I think the patients feel the full benefit of the hearts and souls that are behind this program.
Erin Spain, MS [00:17:29] How often are you working on something that's more experimental in nature or something that maybe isn't being done anywhere else?
Aimen F. Shaaban, MD [00:17:36] All the time, would be the answer. The inspiration comes from the needs of our patients. Most of the patients who leave here, we don't have surgeries or corrections for their particular condition, so there's a lot of humility in that, understanding that, accepting that, and knowing that the only way to balance that is to continue to work hard for those patients. We can offer them treatments in care to change their outcomes in that way. And then for the patients that have fetal surgery interventions to make those better. So every single day we have laboratories that are clinical, we have laboratories that are a basic science laboratory studying genes and cells and treatments at that level. And then we have laboratories in between, we call them translational laboratories that are closer to the clinics, but still require a lot of bench work.
Erin Spain, MS [00:18:18] You yourself are a surgeon scientist. You have a lab. Tell me what's going on in your lab. You mentioned in utero stem cell and gene therapies. This is something that you are passionate about.
Aimen F. Shaaban, MD [00:18:29] I have spent the last 26 years of my life in this area. Specifically, my particular focus has been in the study of fetal immunology, how the fetus understands itself from foreign cells. And the reason that's important is that the fetus is developing that in utero over time, and our ability to treat diseases that exist at a cellular level, dysfunction in cells like sickle cell disease, thalassemia, cystic fibrosis, other cellular diseases, very frequently comes down to our ability to transplant cells to correct the cells that are diseased, and that can either be done by transplanting cells, for example, from the mother to the fetus, mother who's healthy, to the fetus or from a sibling or father. And the goal would be to treat diseases before birth, before they've created irreversible damage, perhaps before they've ever really manifested as a disease period, by transplanting a handful of cells to the fetus at a time where the fetus is able to accept them without rejecting them. The biggest barrier to transplantation after birth is that we have immune systems that will reject the cells and we have to give medications to suppress the immunity that can be quite toxic to a developing brain or heart or immune system in utero. If we can then turn that developing immune system into our favor by educating that immune system that these foreign cells are self, then perhaps none of those medications are required whatsoever. And a lifetime of disease, amelioration or correction can occur without the toxicity of immunosuppression that often plagues bone marrow transplantation, other forms of transplant. And that's the focus of my research, is to understand that, how to do that safely, and the treatment is simply like an amniocentesis, just a small injection as an outpatient procedure into the fetus, all the while within the protective environment of the uterus in the womb, if you will.
Erin Spain, MS [00:20:13] And what stage are you at in this research?
Aimen F. Shaaban, MD [00:20:15] We're at a very late stage towards clinical application, and a lot of it has been tried in the past without success. We have some very provocative protocols that we'd like to put in place here in the next couple of years here, and I think it will be a game changer for a number of these diseases.
Erin Spain, MS [00:20:28] When people come to see you, there's the nurses, there's support folks. There's also this next generation of surgeons like you that you are bringing along and training. Tell me about how important that is, that role that you play as mentor and teacher to the next generation of folks who are going to be doing fetal surgery like you?
Aimen F. Shaaban, MD [00:20:47] That's part of our mission is to train the next generation of surgeons, neonatologists, nurses, administrative team, social workers, genetic counselors, everyone at every level trains here at Chicago Institute for Fetal Health. And we have folks from all around the Midwest that come here on a regular basis. It's an incredible opportunity to learn about these problems, to learn about the care that we provide here somewhat uniquely and from my perspective, to get great ideas from some of the smartest young people in the world. Very frequently they're saying thank you to me for the experience and the opportunity to learn here, and I say thank you to them on a regular basis for their ideas, their thoughts, because these innovative folks, these young minds have the greatest ideas and they are hungry to change the world. That's the balance in education. As you teach, you learn together and you innovate together. And teamwork at the educational level is wonderful. I think the patients really appreciate what we do here with regard to education. They don't see it in any way other than part of our mission, and I really appreciate their accommodating, allowing us to help train the future generations of experts in this area.
Erin Spain, MS [00:21:52] So it's been about six years since the institute was founded and you came on board. What can we expect in the next six years?
Aimen F. Shaaban, MD [00:22:00] I think about that a lot. I think about how far we've come and I think about where we'll be in six years. And I imagine that things that we're talking about right now, treatments at the level of cells and genes will be realistic therapies here in the next six years. Some of the therapies that we're using now with open fetal surgery and such will transition to minimally invasive surgery. And if you can believe it, to operations that we can perform without even making any incision whatsoever, using therapies that can pass through the body to treat the fetus surgically without incision. And if you can envision that possibility, come back here in a couple of years and I'll show it to you. It's going to change the way we deal with a lot of these diseases. Innovation is essential. Patients expect it. We need to do it. It's the only way forward. And that's our goal, is to innovate here for the next several years.
Erin Spain, MS [00:22:49] As we wrap up today, I would love for you to talk directly to these families. Maybe there's someone listening out there who has found the institute and they are about to make an appointment. They're going to come. What can they expect and why should they make their way to Chicago and Murray Children's?
Aimen F. Shaaban, MD [00:23:04] I would say to those families that are out there, you have a partner, you have a friend, you have someone who understands what you're dealing with, and will meet you at the door at the first phone call, at the first email with empathy, with expertise, and with know-how and how to get you from where you are now to a better place. We understand what you're going through and we will provide you with the best possible care in the world. There will be nothing here that can't be done that's done anywhere else in the world.
Erin Spain, MS [00:23:31] What an incredible field to be in. It was really exciting to hear about everything that's coming our way in fetal surgery. So thank you so much.
Aimen F. Shaaban, MD [00:23:41] Thank you very much, Erin.
Erin Spain, MS [00:23:44] For more information, including how to make a referral or an appointment, visit LurieChildrens.org.