The Anatomy of Hope with Dr. Aimen Shaaban

A routine pregnancy ultrasound became a life-changing moment for one family and the beginning of an extraordinary medical journey for a baby named Hope. In this episode, Dr. Aimen Shaaban, Director of The Chicago Institute for Fetal Health, and Hope’s parents, Matt and Megan, talk about Hope’s prenatal diagnosis and how careful planning, multidisciplinary expertise and resilience led to a remarkable outcome and a thriving child today.

Show Notes

• During Megan’s second trimester ultrasound, a routine procedure quickly shifted from a celebratory moment to a scary situation. Doctors identified significant defects with her unborn baby’s heart, abdominal wall and diaphragm, leading to a diagnosis of Pentalogy of Cantrell, an extremely rare condition affecting about one in 200,000 pregnancies.
• The family was referred to The Chicago Institute for Fetal Health, where a multidisciplinary team that includes nearly 60 specialists coordinated care, guiding Megan through pregnancy with detailed planning and preparation for multiple possible outcomes as the condition evolved.
• Hope was delivered once Megan reached 37 weeks gestation and early interventions took place. At just 18 days old she underwent a complex open-heart surgery using advanced imaging and a 3D model of her heart, which helped surgeons fully understand her anatomy.
• Later, a second major operation was performed by Dr. Shaaban to repair her diaphragm, sternum and abdominal wall. This was initially planned as staged procedures, but Dr. Shaaban was successfully able to complete a full reconstruction in one operation, described as “plan A-plus,” after careful planning and coordination.
• The family had expected to stay in hospital for up to a year, but Hope went home after three months and is now thriving. She is meeting milestones and Dr. Shaaban describes her prognosis as “spectacular” and her future as bright.

Transcript

[00:00:00] Erin Spain, MS: This is Precision Perspectives on Children's Surgery from 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. Today we are talking about a baby girl named Hope, who faced a rare, life-threatening medical diagnosis called Pentalogy of Cantrell before she was even born, but received life-saving care thanks to the expertise at The Chicago Institute for Fetal Health at Lurie Children's. You'll hear from her parents as well as Dr. Aimen Shaaban, director of the Institute. He is one of the many physicians at Lurie Children's who performed life-saving surgeries on Hope during her first months of life, including heart, chest and abdominal surgeries. This is really a story about persistence, teamwork and, of course, Hope. Welcome to the podcast, Hope's parents, Megan and Matthew, and Dr. Shaaban.

[00:01:08] Matt: Thank you for having us.

[00:01:09] Megan: Yeah, thank you.

[00:01:10] Dr. Aimen Shaaban: Thank you very much, Erin.

[00:01:11] Erin Spain, MS: Let's start with Matthew and Megan. Tell me a little bit about the two of you and your family.

[00:01:17] Megan: Matt and I have been married for eight years now and we have a 6-year-old, 5-year-old and 1-year-old Hope.

[00:01:23] Matt: We live in Joliet, so we're about 45 minutes south of the city. I am a warehouse manager for a water company and Megan stays home with the kids. That's us in a nutshell.

[00:01:33] Erin Spain, MS: When people ask about Hope and how she's doing today, by the way, Hope is part of this podcast. She's sitting right here with the two of you. What do you say, what do you say about Hope when people ask about her today?

[00:01:43] Matt: My first response is that she's doing great. She's doing better than anybody could have imagined. Everything that we heard leading up to her birth and throughout, she's doing much better than anybody could have anticipated. She still has the feeding tube and is just trying to get her to take stuff orally. But other than that, she’s not on any medications other than stuff for acid reflux, and that’s it. You couldn’t ask for much more than that.

[00:02:07] Erin Spain, MS: And Megan, I understand she just celebrated her first birthday.

[00:02:11] Megan: Yes, she did. She's hitting all her milestones. She's crawling everywhere. She's very fast. So that’s the only tricky thing we run into sometimes. She’s got her little feed pole with her, you know, her feed bag on it, and we’ll be like, “All right, get the feed pole,” because she starts to crawl away from it so quickly, and we’re just chasing her around with it all day long.

[00:02:28] Erin Spain, MS: Oh my gosh. This is just incredible progress. Megan, I want to ask you though, when all of this started, it was at your 20-week ultrasound, and this was a really important ultrasound during your pregnancy that all women go to. Tell me about that day. It changed everything. Tell me about that appointment and what you were told.

[00:02:45] Megan: So for us, we were really looking forward to our 20-week ultrasound just because I had made it through the first trimester. I had previously had multiple miscarriages, so it felt like this huge relief that we made it to the second trimester. We were looking forward to going and seeing baby and finding out baby's gender. It was a huge shock. Basically, there was a long silence, and you could tell the doctor was looking and looking and looking, and the anxiety was kind of growing. And I’m like, “Okay, something’s wrong.” And then the doctor did finally say that there were some significant defects with her heart and her abdominal wall. And then he said he wasn't even sure if she had a diaphragm because of how small her chest appeared. So that just kind of hit—it hit hard—and I was in tears. We were both overwhelmed. And I remember saying to Matt—I don't know at what point, but I was like, “It’s so hard to believe that there are so many things wrong with her when she’s moving all the time, and she’s kicking and she’s so active.”

[00:03:42] Erin Spain, MS: Like, that was one of the things with my pregnancy that gave me some comfort: She moved all the time. That did help me throughout the rest of the pregnancy when we were trying to get to 37 weeks, that she was constantly moving. Tell me what your next steps were after leaving the office that day, and how did you find your way to The Chicago Institute for Fetal Health at Lurie Children's?

[00:03:59] Megan: That day we had seen maternal fetal medicine, and he’s like, “I’m going to refer you to Lurie Children's.” They'll be able to give you better details and have different testing done to find out more in depth about what’s actually going on, because they weren't fully able to tell us. So it was when we went to Lurie Children's that they were able to give us a clearer picture of what was going on.

[00:04:20] Erin Spain, MS: Dr. Shaaban, let's bring you into this conversation. Tell me what made The Chicago Institute for Fetal Health such a good match for Hope's case.

[00:04:29] Dr. Aimen Shaaban: You know, The Chicago Institute for Fetal Health was created to fill a gap—a gap between women’s health care and pediatric health care—and specifically for patients like Megan, Hope and Matthew to be able to bridge that gap, to be able to provide expertise in a one-stop shop that's centered around the patient. These things cannot be addressed by one individual, one specialty or one place unless we bring it all together. And so The Chicago Institute for Fetal Health was created by Lurie Children's and Northwestern Medicine, and it involves roughly 60 different faculty and 30 or so nurses and genetic counselors, social workers, administrators, all geared at caring for Megan and her family comprehensively. And we own that completely. There's no bouncing around from building to building. There's no shuffling off with disconnected conversations at different offices. There aren’t 30 different insurance approvals. If you can imagine what that life is like at that time. It's a one-stop shop where we will comprehensively care for the patient—mom and her baby or babies and their family—from the point of the diagnosis all the way through the pregnancy and then thereafter for as long as is needed. That's what we do. We do it every day, and everybody here is laser focused on the patient, which is the mom.

[00:05:38] Erin Spain, MS: So how rare was Hope and Megan’s case?

[00:05:41] Dr. Aimen Shaaban: So it's extremely rare—one in 200,000 or so pregnancies. There’s no particular genetic cause for this; she’s genetically perfect. Pentalogy of Cantrell is an abnormality of five different defects: a defect in the sternum (the breast bone); a defect in the upper abdomen (the abdominal wall); a defect in the diaphragm; a defect in the lining around the heart called the pericardium; and defects in the heart itself. Those five defects—and sometimes it's best described as an opening sort of lower chest, upper abdomen—and sometimes the heart can be even on the outside of the body. As a result, there are varying degrees of severity. Fortunately, Hope’s heart was not as much outside her body. The defect was manageable. The heart abnormality was something that our cardiac surgeon, Dr. Winlow, an incredible cardiac surgeon, felt that he and his team could approach. And so we brought Megan and Matthew in—I think it was within a week or so—to see us in the center and review it with a variety of different imaging techniques: ultrasound, MRI, and of course, echocardiography. And then we were able to sit down as a group and describe what we saw, talk to them and get to know them a little bit, and understand their thoughts. They’d done a lot of reading. They’re very intelligent folks, as you can tell, but very scared, as everybody would be at that point. And we’re able to channel that energy into information gathering. No matter how you describe medical care, it may seem routine to me because we take care of kids and patients all the time. To a family who's been very healthy, very blessed with two gorgeous kids that they have and their health and such, to then hear this sort of thing—it's shocking. And I don't want to make them relive this trauma. They held up very well. We have a good group of people that really try to get to know the families, and we try to be sensitive but honest and find that balance that allows them to kind of work their way forward, because there’s only going forward; there’s no going back. And, you know, Megan and Matthew, after a number of visits here, we had kind of worked out a plan where we're just kind of waiting for the pregnancy to continue to progress. Megan, she was still pregnant, and she has her own health care, and obviously there's nothing happening without a healthy mom. So that went well, and eventually we worked towards the delivery.

[00:07:51] Erin Spain, MS: Maybe you two could go back to that first meeting as well. Tell me about your mindset during this time. You still had many, many weeks of pregnancy ahead.

[00:07:59] Matt: For me, I’m never going to count something done until it’s done, right? You have to hope for the best and plan for the worst, so that’s kind of what we did emotionally.

[00:08:09] Megan: As hard as those appointments were—because it was like you’d go and it would feel overwhelming—I did appreciate that they were honest with us. We asked them to just give us all the details of what we could be expecting. And as hard as it was to hear those things, I feel like it really did help prepare us for when she was to come, just so that we had a clear idea of what was going to take place. And they did really prepare us too, that plans can totally change. We don't want to say this is set in stone because we've seen things completely go a different way, and you have to take a different route and a different approach. So I think that did help us too, in that when things did change and we had to go a different route.

[00:08:46] Erin Spain, MS: And Megan, I want to ask you though, how did you feel, you know, as the patient—as Dr. Shaaban said, you are the patient here, you’re still a pregnant woman receiving health care. How was that experience for you at the Institute?

[00:08:57] Megan: I could tell it wasn't just routine for him, and that meant a lot to me. I was in tears pretty much at the end of each appointment, and I was getting up to leave. Dr. Shaaban came over to me, and instead of shaking my hand, he said, “I’m gonna give you a hug.” And that just meant a lot to me because, you know, it just showed that you did care and it showed that you were invested. We weren’t just another case or another, you know, just somebody you have to work with. It’s truly your passion for other people. And so that meant a lot to us.

[00:09:23] Dr. Aimen Shaaban: Those are tough visits, and you can live 100 years on this earth and never encounter a situation that prepares you for that time. You see these two very mature, very solid, very—I mean, the people you’d love to have as your neighbor, right? And as your family. Your heart goes out to them. They impressed us all—impressed us all—with their resolve to do the best they could do for Hope and for their family, and to be prepared for whatever challenge was coming ahead, and to take it one step at a time. And they did great. They did. They're amazing. They really are.

[00:09:53] Erin Spain, MS: Dr. Shaaban, I want to go back to this plan. So you had to create a plan for Hope. We had to get to 37 weeks gestation. And then what was going to happen after that?

[00:10:01] Dr. Aimen Shaaban: Fate was in their favor, and things went well through the pregnancy. Megan was healthy through the pregnancy, and Hope hung in there and made it to 37 weeks, and it was time to bring Hope out into the world and begin the process that we spent a lot of time planning for. It was coordinated between a combination of the Cardiac Intensive Care Unit and the Neonatal Intensive Care Unit and all the teams surrounding Hope's care and Megan's care. She went from basically covering three units: the delivery unit, the Neonatal Intensive Care Unit and the Cardiac Intensive Care Unit. Those three combinations of multidisciplinary teams combined to provide that safe structure to allow Hope to transition from fetal life to newborn life and care, and for Megan to deliver her baby and be healthy throughout that. And fortunately, that went well. We had, you know, algorithms in place, just kind of like when you're flying an airplane, about this is plan A, and then if we encounter this, this is what we do next. And we went down a couple rungs on our algorithm here because, you know, Hope had a little bit of her own plan. Her heart disease was more significant than the abdominal wall and chest wall disease, and it needed to be addressed. Without a functioning healthy heart, you really can't do anything else. So we went down that path first, and we were going to figure out the solutions to all things once we had gotten through that gateway, which was not a small thing. It was obviously the biggest thing—biggest event in her life, in all their lives. And, you know, Dr. Winlow, incredible, and his team very methodically looked at the imaging and the structure and actually recreated a 3D model to understand this very complex anatomy of the heart. And they spent a lot of time evaluating it with ultrasound, echocardiography, and the model CAT scan as well, to understand how to repair this heart and make it not just fixed, but fixed well, so that Hope can have a great, long life. And so they went through this, and they made a detailed plan and they executed it flawlessly. There were some bumps after the operation while Hope was recovering. But she got through that well with a lot of care from the cardiac intensive care team and with some, you know, luck and blessings that she had. She got through it, and we were all very relieved to find her about a week or so later looking as well as she did, and it was really a big relief to see the heart functioning well and her blood pressure and her perfusion and everything looked great.

[00:12:12] Erin Spain, MS: She was just 18 days old, right, Megan and Matt, when this surgery took place? Tell me about those days after her birth, caring for her in the NICU, being there, and preparing for this surgery.

[00:12:23] Matt: The game plan originally was she would automatically get a breathing tube, all of these things to make sure that she was stable. But when she was born, she was breathing on her own. She was doing well. Mama did have a C-section. She was able to see Hope before they took her away. The doctor for Megan said that she was doing well. “If I wanted to go with baby.” Mama’s like, “Go with baby.” So that’s what we did. That was the plan. So I went over to the NICU with Hope. She was doing well, I would say for probably 45 minutes to an hour. They went to change the Anderson in her nose, and she got upset and decided to stop breathing. So that’s when they ended up putting in the breathing tube. And we were in the NICU, I believe, for two days. Mama got to see her on the second day for a bit. And then she was moved up to the CCU. Like Dr. Shaaban said, her heart disease was the main priority at that point that they wanted to monitor. I believe it was Day 4 when she went into the cath lab. They went to put in some flow restrictors to kind help reduce the amount of blood flow to her lungs, to reduce the chance of damage. The surgery was successful, but it didn't get her to where they wanted her to be. So that's when they were really looking at getting the open-heart surgery prepped and ready to go. So that's when they were doing all that research that Dr. Shaaban was talking about with the 3D model. That way they really understood what was going on with her heart and what needed to be done. So that's kind of the timeline that I remember going into it. Then it just kind led up to that long day.

[00:13:59] Megan: Matt was my rock because I was not so much focused on all the details of the medical side. I mean, I was, but I couldn't remember everything. I had just had a C-section, and a lot of things. It was a little rough afterwards. So, because I did hemorrhage, but they were able to get it under control after that. So I was just a little tired, and I was really amazed at how he was able to keep everything together and just remember all the details. And so that helped me if I, you know, was forgetting something to ask him. And then I was more focused on just trying to spend as much time with my baby as I could. I wasn’t able to hold her—I think it was Day 5—she was very fragile. So it was a big moment for me when I got to finally hold her and just love on her. And so the days leading up to her surgery, I just sang to her, read her books, you know, spent all the time that you could with her. And then the day of surgery, it was very long. So she was in the OR for 12 hours. We just spent the day trying our best to distract ourselves and just wait for those text messages to come through with updates. When we finally got to see the doctor, it was a relief to hear that things went according to plan, but he’s like, “We’ll see how she does overnight.” It just felt like some very long days after that, of waiting and just slowly her coming off of medications or seeing slow improvements. Those are very long days, but we felt more hopeful with each day, and we were just covering her in prayer. We had family and friends all over the country praying for her, and we’re just so thankful to the Lord that it all went well.

[00:15:27] Erin Spain, MS: I mean, she did recover really well. She got stronger, mm-hmm, and stronger. And Dr. Shaaban, you were able to go to the next step of this process after this big heart surgery. Tell me about that. Tell me about her recovery and then this big operation that you were going to do for her sternum, diaphragm and abdominal wall.

[00:15:44] Dr. Aimen Shaaban: Yeah. I’ll tell you, after that heart operation, everything else seemed secondary. Honestly. She had done very well, and we were very impressed. And Dr. Kiona Allen is the director for the Cardiac Intensive Care Unit. And she was just pleased with her recovery and how well she was doing. And she spent a lot of time with Megan and Matthew discussing options and progress. And there were a few temporizing measures that were put in place to allow coverage of the heart and coverage of the organs—things that could be put off for a while to allow her to grow and get bigger, even for several months. And we spent a lot of time talking about the benefits and the options of trying to repair early versus delaying the repairs and letting them go home even, and letting her grow and taking some time between. And as we kind of talked through it, we finally agreed that we were going to go ahead and proceed that she was in a good spot. And Dr. Megan Coghlan, our director of neonatology and co-director for the Fetal Center and the NICU, felt that she was in a good spot to be able to undergo another operation—another big operation. Not as big as the heart operation, but definitely a big operation. We had spent a lot of time talking about it and planning, thinking about the contingencies as you start to try and repair the openings that exist in different areas and how to do all that in either a primary or staged way. And, you know, the primary being just getting it all done in one operation, which was, you know, the “holy grail”—it’s fantastic. But it's somewhat of a dream, and it was more likely that we would need to do this in a staged way so we wouldn't disrupt her physiology and make her sick and take steps backward that we didn't want to take. So, a good amount of planning and nutrition and growth, and a lot of storybooks at the bedside there by the family—by Megan and Matthew—and a little bit of time, and we said it was a good week, a good time to try to get this done. And we went in with the plan A, B, C and D. As we started the operation that day, we spent a lot of time talking to Megan and Matthew ahead of time about what the contingencies were. We went through those in the operating room, and started well, and she seemed to be handling it quite well. Her heart was really strong, which was wonderful. Her tissues were healthy and really had recovered a great deal. And we were able to deconstruct the anatomy a little bit to be able to repair it. I hate to describe it that way, but you really kind of have to rearrange a lot of different structures in order to be able to close the chest from the abdomen, to make sure the heart is covered and the sternum (the breast bone) is closed. And then the abdomen is closed and make sure it's all done in a way that isn't pushing the baby too hard. And so a lot of conversation, discussion in the operating room. I think Megan and Matthew got updates periodically. I'm sure they were pacing the floors and drinking as much decaffeinated coffee as they could, waiting for another very long day.

[00:18:23] Megan: It wasn't even that long. It was like three or four.

[00:18:25] Dr. Aimen Shaaban: Okay.

[00:18:25] Megan: We were prepared for a full day, and we were like, “Wait, it’s done!”

[00:18:29] Dr. Aimen Shaaban: It went well. We were able to close off the diaphragm. Partial repair was done by Dr. Winlow from the cardiac surgery team. And we were able to close off the diaphragm to separate the chest structures from the abdominal structures below. We were then able to close the pericardium around the heart, using some of the tissue from the inside of her chest. And then we were able to mobilize and close the breastbone, which is kind of a hard thing to describe and to guess at. But her tissues were soft enough to be able to pull them together to close the cleft, so that she had a bony covering, and she had all the layers covering her heart and all the things that are typically there separating her chest from her abdomen. The last piece was to close the abdomen and cover the liver and the organs. And so we kind of went through our usual stepwise routine to separate the tissues to allow them to advance and close. And sometimes we have to use a piece of mesh, temporary mesh or a long-term mesh, to cover those organs, because we can't pull it all together right at the same time. But by closing the chest and closing the breast bone, it really helped to allow us to close the abdomen, and we were able to close that entirely as we would ideally want to. And it was “plan A-plus.” You know, it really went well, and we had a nice closure and, eventually, a little belly button as well, to give her something to focus on for a long time, because that’s a very important part of the body. It got done, and I just went and met with Megan and Matthew to give ’em the good news. And I think we were all very pleasantly surprised about how favorable things ended up going for her. The operation is the first step; then after that is the care. It’s a long road. The first day or two is just stability, day by day, hour by hour. Comfort and just making a little bit of progress during that time. If you have a stable few days after the operation and Hope is quiet and comfortable, that’s a huge win. And that's what happened. She did really well for those first few days. As the next several days started to play out, we allowed her to wake up progressively, to become more alert, and to take on a little bit more of the breathing herself. We eventually started feeding her by the tube in her nose initially, because she had the breathing tube in her mouth and obviously was sedated and such. But she did very well. We fed her breast milk, and she grew and recovered. And about a week or two later, I think we all breathed a little bit easier. We thought Hope was going to make it. She was trying to heal everything that we did, because you can do a lot, but the patient has to heal and has to recover, and she knocked it out of the park. She really exceeded everybody's expectations. Made her mom and her dad proud and happy, which is the most important thing on earth. You know, we speak about the heroes in the room here. Obviously Megan and Matthew are heroes, but I tell you that Hope is a hero. She’s an amazing little girl. You see how she looks, right? She just wants that microphone, and she wants to get involved. She’s intelligent, beautiful, energetic—just an incredible child. Their reward for their efforts and all that they went through is a healthy, happy, beautiful baby that will grow and hopefully will change the world—if not, just have a happy life.

[00:21:25] Erin Spain, MS: Just going off the surgery that Dr. Shaaban performed, I remember being in the room as they all came in, and very nonchalantly Dr. Shaaban puts out, “It’s all done. It’s all closed.” And Megan was like, “Oh, good, good.” I was like, “No, sweetheart, it’s all done.” And she’s like, “Wait, what do you mean? No, he closed everything.” And then of course, she starts crying. I believe it was December 19th. She’s like, “This is the best Christmas present ever.”

[00:21:51] Megan: Well, yeah, that was what I thought of earlier too. When they walked in—we were prepared that it could take three surgeries—Dr. Shaaban had talked about with closing her sternum that that might be something we'll do down the road, like maybe when she's two. We’ll see how it goes. And so when I can still picture, like when everybody walked in and we all turned, and they’re like, “It’s done.” I was absolutely floored. I’m like, “This is amazing.” And the fact that it was done, like everything was done. It felt like this huge relief. Obviously, she still had recovery, and that was going to take time, and it's a long process. But the fact that she didn’t have to endure surgery three more times after that was just the biggest answer to prayer, the biggest blessing. And we were so thankful that things went that way, and it just felt like, okay, now from here, we’re focusing on recovery. And then home. Yeah. Home had felt so far away. It felt like we were in the hospital forever, and in reality, we were home in three months. Wow. And we were prepared for, you know, we could be there six months to a year. So that in itself was absolutely amazing.

[00:22:49] Erin Spain, MS: Well, tell me about Hope today. I mean, you got through this recovery, you got to bring her home. Now she's had her first birthday. What are things like, and how often are you still interacting with the care team at Lurie Children's?

[00:23:00] Megan: When we first came home, it just kind of felt like appointment after appointment, and seeing all the different doctors and following up on things. But now, we see cardiology. She has an echo every couple of months—now every three months. And then she doesn’t even have to follow up really with the Fetal Health Institute anymore. She had her G-tube put in like a month and a half ago, and we will go for training to learn how to change it out ourselves—they will replace it. But other than that, she just sees her pediatrician and she sees cardiology every three months. That's where we're at. So, and she does go to speech therapy, physical therapy and occupational therapy and all of that, but they’re all like, they’re like, “Hey, she's doing so well.”

[00:23:43] Megan: When I’d see them, they’re like, “Just keep doing what you’re doing, Mom.” And I’m just kind of like, “Okay, why do we have appointments?” She’s right where she’s supposed to be. And then they’re finally like, “You don’t need to see us anymore unless you have some concern.” She is hitting all her milestones. And then her speech therapist was like, yeah, and she's even ahead for her age with her vocabulary and things. Really, all we have left is to get the feeding situation down, and she’s doing great, though.

[00:24:09] Erin Spain, MS: That's amazing. Dr. Shaaban, tell me about that. Tell me about the prognosis for Hope and what she's going to experience going forward.

[00:24:16] Dr. Aimen Shaaban: If I told you anything other than a spectacular prognosis, I think you’d think I was crazy because that baby looks amazing. So you can see just looking at her, how well she is, how vibrant, how healthy her heart is, how healthy her gut, intestines, lungs and brain. Those are the most important things that determine prognosis, and there’s just nothing but a bright future for her. I will be seeing you once a year for the next five years, just to check on things and mostly just to hear what she's doing. There are some things as she grows, you know, things have to grow with her to accommodate her growth, and we'll be monitoring those things, and nothing's taken for granted. But I don't see anything other than a healthy, happy future for them. Really, it’s remarkable to see her, and I just want to take a picture of her and put it on the wall as the most beautiful child in the world. She just doesn't look like she's had any of those issues. Credit to the two parents for their positive thinking, their prayer, their toughness and their intellect. All along the way they had a full family. They had two other beautiful kids at home that they took care of, and they leaned on their family and friends and church. And hopefully their reward is a lifetime raising a beautiful baby.

[00:25:23] Erin Spain, MS: I do have to ask, was her name intentional? Hope?

[00:25:25] Megan: Yes.

[00:25:26] Matt: There was a different name that we were thinking of for a girl and then a different name for a boy. And then we got the diagnosis, and I just kind felt like we needed to go in a different direction. And Hope is where we landed, because we needed hope, and we got her. We got her. So, that's definitely what we needed through that time was hope. It fits her well. I think that she can give hope to others that may be going through something close to it.

[00:25:54] Erin Spain, MS: What would you tell other parents who are facing a prenatal diagnosis like this, and they're coming to the Institute for help? What would you like them to know going into that experience?

[00:26:04] Megan: For us, we know that every life has value. Every life is important. Do not lose hope. We knew that there was a very good chance that she wouldn’t make it. We were also preparing for that as well. But as Matt said, we were praying for the opposite. We were praying that she would live a long and healthy life and asking the Lord to bless her with that long and healthy life. But we also knew that that might not be the case if that wasn't the Lord's will. So our advice to other parents is not to lose hope, but to be the best advocate that you can for your child.

[00:26:34] Matt: Both of you are exactly who families should hear from, because you’re going to be honest, you’re going to be positive, you’re going to be sensitive and you’re going to give them the power to be able to make the best decisions and approach things in life that they have never dreamed they would encounter.

[00:26:48] Erin Spain, MS: Thank you all very much for sharing with others today. We appreciate it.

[00:26:52] Dr. Aimen Shaaban: Thank you, Erin.

[00:26:53] Matt: Thank you for the opportunity.

[00:26:54] Megan: Thank you.

[00:26:55] Erin Spain, MS: For more information, including how to make a referral or an appointment, visit luriechildrens.org.