Sunny Gault 0:02
For nine months, our bodies are doing everything possible to protect our babies. And then they're born. And as parents, we still do everything we can to keep them safe, including preserving their stem cells at birth, through cord blood and cord tissue. But what is this process actually? Like? How can it help? And are family's really seeing results? That's coming up next on Preggie Pals!
Sunny Gault 0:56
Welcome to Preggie Pals! My name is Sunny and I'm the host of Preggie Pals. This show is all about you and your pregnancy journey. We know you ladies have a ton of questions. And we bring together both experts and mamas not only to provide information, but also to share personal experience so you know what to expect. Remember that book, What to Expect When You're Expecting? Okay, we're the podcast version of that. Just a little bit about myself. I have four kiddos, but only three pregnancies. So yes, if you do the math that includes a set of twins. And it's been a while since I've personally been pregnant. But I do love hanging out with all of you pregnant mamas week after week. And if you love Preggie Pals just as much as we do, be sure to tell another pregnant mama about our podcast. And for those of you listening to Preggie Pals at home, you can listen to our show through your Alexa device, just tell her to play Preggie Pals, and she'll pull up our most recent episode, so you guys can have some fun with that one. Today's topic is very near and dear to my heart, we are talking about the decision to bank your baby's cord blood and cord tissue. And I have a couple of guests on the show that I'm going to introduce you guys to in just a little bit.
But first, I wanted to share some of my personal experience with this topic because this really does hit home for me. In 1993, my brother was diagnosed with Acute Lymphocytic Leukemia. Leukemia is cancer of the blood. And we went through 13 very trying emotional months of trying to beat this disease before my brother ultimately passed away from the disease. But during that time, we would have done anything, you know, just anything to fix this right to help him get better. And there was actually a point where we had a possible donor. So with leukemia, it's cancer of the blood. So it's not like you can't just do you know, chemotherapy on a certain part of the body, you really got to do it all over. And you know, surgery isn't really an option because it's in your blood. But there are bone marrow transplants, siblings are usually a good match a bone marrow match. However, I happen to be a half sister, we share the same mom, and my dad adopted my brother. So I wasn't a good match. My parents weren't a good match. And we were put on this list. And unfortunately, and this is the really heartbreaking nature of the situation. We actually found a donor, but my brother was too weak to have the surgery. And so it was too late. He passed away in December of 1994. At about, I think it was 28 years old when he died. And that sticks with you, right? And I saw what my parents went through. Obviously, we were all going through emotional trauma during this time. But I really got to see what my parents went through.
Sunny Gault 4:23
And fast forward to 2010 and I'm about to give birth to my first child. And those emotions came back up, you know, because you would do anything for your child, just anything. And I believe was actually my mom was doing some research found out about cord blood banking, and we started looking into it. And this was a no brainer for us, based on our previous experience, had cord blood banking, been around and had my brother had this available to him, it could have saved his life. And so even though leukemia doesn't run in the family, I just had this personal experience with it. And I thought, Well, if there's anything you know, it's not just leukemia that this can help. And we're going to talk about that a little bit more in today's episode. But I would have done anything to save him. And so I thought, if I would do that for my brother, what would I do for my child, you know, you would just do anything. So this was a no brainer.
Sunny Gault 5:31
I've got four kids, as I mentioned, we ended up banking cord blood with my oldest son in 2010. Then when my second son was born in 2012, they had cord blood, and they were also banking cord tissue. So we did that with my son in 2012. And then I had twins and 2013. Because I'm crazy like that. And we ended up banking, cord blood and cord tissue with my twins as well. So I've personally decided to do this. Thank goodness, I haven't had to use this yet. But this was just something that was really important to me. And I think parents have a lot of questions about this. What does it actually do? How can it help? What's the process and so I really wanted to break it down for our Preggie Pals listeners in an episode and so that's why we're talking about this today. So obviously, I'm a big fan of cord blood banking and core tissue banking, but I don't want you to take my word for it. Coming up after the break. We have two special guests joining me on preggy pals, Dr. Jamie Shamonki is the chief medical officer with CBR, which stands for Cord Blood Registry. And Jessica Holman banked her daughter's cord blood and ended up needing it later when her daughter was diagnosed with cerebral palsy. So we're going to share their amazing stories coming up right after this break.
Sunny Gault 7:02
Welcome back! You know, as a parent, I feel like I'm always trying to be proactive with my kids, especially when it comes to their health and safety. And that's really what cord blood and cord tissue banking is all about. We have two awesome guests joining us today on preggy pals, Dr. Jamie show monkey is the chief medical officer with cord blood registry. They have helped millions of parents bank, their children's newborn stem cells, including the home and family. And Jessica Holman is also part of our show today. Her daughter was diagnosed with cerebral palsy, and she was able to use her daughter stem cells to help improve her situation. Ladies, welcome to Preggie Pals. Dr. Shamonki, I'd like to start with you. What would you say is the overall goal of cord blood and cord tissue banking?
Dr. Jamie Shamonki 7:54
Sure. So banking, cord blood and tissue is all about preserving the newborn stem cells that are abundantly present in a baby's umbilical cord. So we all have stem cells throughout our bodies, even as adults, they keep us healthy by producing new cells every day. But it turns out that there's actually two very specialized types of stem cells that are present in a baby's umbilical cord that are exceptionally powerful. Doctors discovered a little over 30 years ago that there's characteristics of these cells that can actually help save or significantly improve lives. So the goal of banking these cells is quite simple. Your doctor collects them after your baby's born, and they get frozen by a stem cell bank for future use.
Sunny Gault 8:44
Gotcha. Okay, that makes sense. Because my next question was going to be, why do we have to collect these at birth? Why can't we use stem cells later in life? So what you're saying is the stem cells we collect from a baby are a little bit different than cells we create as adults...
Dr. Jamie Shamonki 9:03
That's absolutely right. And it's actually a great question that sometimes even stumped doctors and healthcare professionals. So I mentioned, you know, we do have a lot of stem cells in our bodies, even as adults, but they're quite different from the kinds that are in umbilical cord. And it turns out that there's several things that are unique about the cells that are in the umbilical cord. The the sort of specific things that make them unique actually have to do with the particular reason for how the stem cells will be used in future treatments. So one way which is sort of the classic way is stem cells are used therapeutically in a bone marrow transplant. A bone marrow transplant is used for certain types of cancers or inherited blood disorders.
Dr. Jamie Shamonki 9:52
The first cord blood transplant was for a five year old boy named Matthew who was born with a disease called Fanconi Anemia. And Matthew needed a bone marrow transplant to save his life. But he didn't have any bone marrow match from any of his relatives or any other donor. This is key because if stem cells are in a good match, a transplant will be rejected. But it just so happens that Matthew's mother was pregnant with his baby sister. And it turned out that her umbilical cord stem cells were a good match for him. So what doctors learned after Matthews, successful cord blood transplant and many that soon followed is that umbilical cord stem cells are much less likely than bone marrow derived stem cells to be rejected in transplant. So that's super important for people whose lives depend on surviving a transplant. However, certain diseases can be treated with a person's own stem cells. So by saving your child's umbilical cord stem cells, he or she is guaranteed to have a perfect match available if a transplant for one of these conditions ever is needed in the future. So again, super important to you would want to save those stem cells at birth.
Dr. Jamie Shamonki 11:04
But there's another thing that makes it important to bag at birth. And that has to do with the second way that stem cells are being used therapeutically. It's actually innumerable ways. But we can capture them all under this phrase regenerative medicine. So Jessica has experience treating her daughter's cerebral palsy with Cord blood is an example of regenerative medicine use. And here's what's cool. Where we're learning that there is another population of cells, that's unique to cord blood, that helps stimulate the repair of damaged tissues. So this probably doesn't even have to do with the stem cells, per se, in the cord blood, it's another whole population. And you can actually, of course, take blood from anywhere else in the body and find these cells, it really does appear to be unique to the cells collected at the time of birth.
Sunny Gault 12:01
Wow. And I don't know, this may sound like a really strange question, but I'm thinking cord blood umbilical cord, like how many stem cells can you actually collect from a baby's cord blood? Is there really enough to collect and preserve? So person can really use that throughout their lifetime?
Dr. Jamie Shamonki 12:20
That's actually a very insightful question. Because we do know, as we're conducting all of these regenerative medicine studies that it appears as though the more cells you can deliver, the better the outcomes are. And you're right, right now, if you collect a unit of cord blood, or cord tissue, there's only so many cells. And so that does limit the amount of dose that you can provide when you're trying to address these various conditions. But the one thing that's really exciting as well in this area is that we have expansion technology that is actually here today, where we can take a unit of cord blood, and you can expand the number of cells within that unit. And it's going to continue to evolve. So what I foresee in the future is that as we find more indications for Regenerative Medicine, using cord blood and cord tissue, we will have refined the use of these expansion technologies, you'll be able to also select the cells that are most beneficial to expand, and then be able to infuse many more doses over somebody's lifetime.
Sunny Gault 13:32
That is incredible. I mean, it's almost, it's almost like Sci-fi incredible, right? Jessica, I want to get you involved in the conversation, you have a really unique story of your family's decision to store the cord blood and tissue for your children. So tell us a little bit more about how you got involved in all this.
Jessica Holeman 13:54
Yeah, our story actually started with the desire to make sure that we were doing everything we could for our future children. We were pregnant with our first baby and so, so excited. And I happen to have a father in law who is an OB GYN. And so we knew that this that we wanted to do everything that we could and with talking with our father in law, he mentioned the possibility of banking our children's cord blood. So once we sat down with him, we did our research, we talked about what it would mean, what is cord blood blinking. And we ultimately decided that it was going to be something that was really important for us to do. And so we decided that this was preventative to invest in our children and our family's health. And so we went ahead and decided to bank cord blood and then told our doctor about it and she obviously helped us with the process and little did we know that we would ultimately end up using some of our children's cord blood a couple years later.
Jessica Holeman 13:59
Okay, and did you bank all of your children's cord blood cord tissue? Or did you just do it for your daughter? Tell me more about that.
Jessica Holeman 15:09
For the first two, my daughters are almost seven and five. We just did their cord blood. And then my son who was almost three, we did his cord blood and his tissue.
Sunny Gault 15:21
Yeah, I know, for us, we kind of went back and forth with that, you know, we ultimately did it for all of our kids. But at the same time, there was always that question of, can he borrow his brothers sisters cord blood if needed? Because, you know, we talked about siblings and siblings usually being a good match. I feel like this is a good lead in for Dr. Shamonki, for you to talk a little bit more about the science behind stem cells and banking so parents can make a more informed decision on do they do this for one kid? Do they do this for all their kids?
Dr. Jamie Shamonki 15:54
Sure. So I talked a little bit about transplants, of course with Matthew and Fanconi Anemia. And in the last 30 years or so, cord, blood has been used to treat over 80 conditions for 1000s of families. So lots of people being helped through that mechanism. But I also started to mention regenerative medicine. Regenerative Medicine is the really exciting and emerging area of stem cell science. And that largely refers to using a biological sample, such as cells from cord blood or cord tissue. And what you're trying to do is stimulate the body to heal or repair itself. And the way we think this works, the science behind it is through a mechanism called paracrine. Signaling. That means that populations of cells that are in either cord blood or cord tissue can actually talk to the body's immune system, and other cells in the body. And they signal to the body to start repairing itself. It seems like magic. But it's actually really remarkable. And there's a lot of different conditions that can be addressed through this mechanism.
Dr. Jamie Shamonki 17:05
So for example, cerebral palsy, right, I know that Jessica will talk about later. Cerebral palsy can be caused by different events that all happen around birth. And it can manifest in a variety of different ways. But the common theme in cerebral palsy is that there's damage that occurs to a part of the developing brain. And that leads to difficulties with motor function, we think of this as a single event. But in fact, there's probably an underlying ongoing inflammation, which continues to cause damage. So it's a bit of an oversimplification. But we have evidence now that these newborn stem cells are able to decrease that inflammation and stimulate repair of the body over time. So this is how we started to understand that these newborn stem cells could help repair even in conditions where we feel like there was a single event of trauma, but we're able to help the body start to heal itself. So one really exciting thing that that totally deals with inflammation is, is around COVID. So you may have noticed there are several studies going on around the world right now that are using umbilical cord derived cells to fight the severe symptoms of COVID. And this actually makes a lot of sense, because we understand many of the severe manifestations of the viral illness have to do with an immune system that's gone haywire. So if you're able to address a disease that has a major inflammatory component, such as what we're in right now, with a huge pandemic, it's it's really powerful, because what you realize is that there's a number of conditions that affect our aging population that all have a component of chronic inflammation. So we've seen cord blood and cord tissue being used to treat diseases that we're all really familiar with, such as autism, of course, cerebral palsy, type one diabetes, other autoimmune disorders. And the idea is that there will be more conditions, particularly those that affect large populations as they age, such as arthritis and heart disease, various degenerative diseases that will have some relief, potentially realized through regenerative medicine and through the power of newborn stem cells. Does that answer your question?
Sunny Gault 19:37
Yes, it does answer my question. And then to add on to that, for parents with multiple kids, you've explained the science part of it, but I'm just wondering, for parents with multiple kids, how important is it that parents do this for each of their children? Right, because there is a financial aspect to all of this.
Dr. Jamie Shamonki 19:56
You know, it's a really reasonable question. I am always cognizant that everybody, of course, wants the best for their children. And raising kids can be a very expensive thing. So I get it. I'm actually sending my firstborn off to college tomorrow. So I know firsthand how much kids could run you. You know, but and I always do tell people that they should preserve newborn stem cells if they can. So it really, it comes down to an individual cost benefit ratio for each family. But the guidance is my guidance is if you can preserve cord blood and tissue for all of your children, it would be wonderful if you could. And the reason is that there are times that it's best to use your own stem cells. And then there's other times it's best to use a closely related donor cells and siblings are great. When you think about a closely related donor, they're oftentimes really great matches for things. And we're seeing that with regenerative medicine, it's creating opportunities that may benefit other family members well into adulthood as well. So having more cells stored would be a real advantage if it's something that your family can afford.
Sunny Gault 21:13
Absolutely. All right, well, coming up after the break, we're going to chat more with Jessica about her experience with getting the cord blood and the tissue kits, bringing them to the hospital, you know all the logistics. We'll be right back.
Sunny Gault 21:31
Welcome back, we are continuing our conversation about cord blood and cord tissue banking. Jessica, you are up. Let's talk a little bit more about the practical side of making all of this happen. You guys decided to bank your kids cord blood and cord tissue. But what happened next, tell us a little bit more about the process.
Jessica Holeman 21:51
Sure. So after we decided that cord blood was for us, we talked with our doctor at one of our doctor's appointments. So if you're on the fence, you can talk to your OBGYN. If you're totally decided, just talk to them as well. So you start with our doctor, we told her that we were interested in it, she gave us some information. We then just signed up online, we went to cord bloods website and signed up and they mail you a kit. It's just this little box that you is fully enclosed, and we popped it into our hospital back and off, it went with us when it was time to have our baby. And you hand it to the nurses when you walk in the door and they will take care of it. They will talk to the doctor and they will collect everything that they need to you're totally focused on having a baby and honestly, I could not remember a single thing about whatever they collected, I have no idea because I was a little busy. You know, just a little busy too. So but um, and then they collect everything that they need. They give you the box back there's a phone number on the box, you call that phone number and somebody will come pick up that box from your hospital room. And and then off it went. We got an email once it arrived nice and safely at cord blood. And that was it.
Sunny Gault 23:17
Okay, now I want to transition a little bit and talk about you ended up using your daughter's cord blood. So talk a little bit more about her diagnosis. How did you know something was wrong?
Jessica Holeman 23:31
Sure. So Abigail was born in April, our delivery, our labor and delivery was great, completely fine. We had her and it was wonderful. We were juggling two babies at home. We had a 16 month old and Abigail. And and it was times were crazy. But they were good. And we were just having a great time with our two little kids. It wasn't until Abigail was about 12 months old, that we realized that she was not hitting her developmental markers that she should be hitting. And so once we were talking to our pediatrician about her developmental delays, we then looked into getting evaluations. Ultimately, she qualified and needed physical therapy. But it wasn't until about 16 months that we actually realized that there was a more serious problem then she didn't want to walk. We went to the doctor and they actually it was pretty easy to diagnose her with some tests. And we found out at 18 months old that she had cerebral palsy she had had a stroke in utero. I had no idea. But at some point in my pregnancy, she went into distress and had a stroke. And part of her brain died in that process just like a stroke for anybody would. And so that began our journey as a parent of a kid with cerebral palsy. Your world gets turned upside down. In a lot of different ways, and we just deep dived into how can we help her? How can we do whatever we can now for her a research that we had seen said that they can learn new skills under the age of five years old. And so we set out to do absolutely everything in our power to get her into whatever interventions we needed as soon as possible. So yeah, so that's kind of where we started.
Sunny Gault 25:29
And then did you guys think about the cord blood right away? Was it like, Oh, my goodness, there's this problem? Oh, yeah, we've got that cord blood? Or what did that look like?
Jessica Holeman 25:40
For the first like phase, kind of like newborn phase? Like, you're just in survival mode, you're just trying to figure it all out. And so honestly, CBR, like our cord blood didn't even cross our mind. Until actually, they called us in such a crazy terms. And I don't remember how, but we had gotten a phone call, or they were asking us, I mean, I wish I could remember how that contact happened. But they said, Would you would you be interested in some of the research that's going on for for stem cells, and we looked into it, and ultimately, we realized that Duke was doing a study on kids with cerebral palsy and their cord blood and being in their cord blood being infused back into them. Wow. And yeah, so that's how we we found out through cord blood registry that there were options. at three years old. It was about it was about two years old that we found out that there were options that we could do with our cord blood and her cerebral palsy.
Sunny Gault 26:48
Oh, my goodness, I'm just thinking how excited I guess maybe happy you must have been when you first saw the Duke was doing this study and what was going through your mind?
Jessica Holeman 27:01
Hopefullness, but like, also, really, I mean, can we get into this clinical trial? Like, it's, it's a clinical trial, this is all so new. And so, uh, you know, like we said, we are going to do everything we can if the doctors tell us no, they tell us No. But we, I mean, it took a cup a month of calling and getting all of the paperwork that we needed from all of her doctors. And we submitted it to Duke and they called us back and said that she qualified and off we went, well, six months later off, we went to Duke and we got to do a you know, we got to really experienced something so awesome. It's it's very anticlimactic. It's just an IV. And it took like 15 minutes for all of her cord blood to go into her little body. And that part was a but the whole experience was really cool. And just to to see something that we didn't, we didn't know if we would ever use the cord blood. But at three years old, we ended up using Abigail's.
Sunny Gault 28:11
Yeah. And then after this process took place, what were your expectations? I'm assuming Duke didn't say all this is going to happen. And that's going to happen. But like as a parent, were you expecting to see results right away? And what actually happened?
Jessica Holeman 28:29
Well, it's our expectations were we know this is helping our daughter at the end of the day, just can't hurt her. It can only help her. So I think that was really the expectations because it was still so new. The clinical trial wasn't technically done yet. You know, this, there had been studies that show improvement, but they didn't know how much how often and, and a lot of it is combined with what kind of therapies you do afterwards. And so so there's a lot of moving parts and especially with Abigail's cerebral palsy, it's so different and it is ever changing. So it's not like she's going to be the same today she is going to be in six months. So a lot of that was trust in the fact that we are doing this to better our daughter whether we see clinical results or not. So that's really how we walked into it, walking away from it. We did see improvement. There's a test. It's called a gross motor function test that we do. It's a it's for kids with cerebral palsy. There's different grades. My daughter is mild, she's a GMFM. She's like the grade one category. But then in this test, it shows where where does she lie with other kids with cerebral palsy, and so she was in the 28th percentile when we went into the she was in the 28th percentile for kids with cerebral palsy, I, a year later, we were in the 90th percentile. Wow, we made a huge increase. A huge increase. Yeah. Now, it's hard because we were doing physical therapy. We were doing occupational therapy, we, like I said, we've been doing everything we possibly can for her. But I can't sit here and say that that did not help her. Because there's no way she could have just gotten from, in my mind, there's no way she could have gotten from the 20th percentile to the 90th percentile. Yeah, that's awesome. So, so we saw great improvement. She definitely was gaining skills faster than she should have been given her cerebral palsy.
Sunny Gault 30:47
That is fantastic. Jessica, I am so glad to hear that. And thank you for sharing your daughter's story with us. Dr. Shamonki, there are many families that have benefited from cord blood and cord tissue banking over the years. But for parents who are listening to today's episode, perhaps they're still on the fence about this. What would you say to them?
Dr. Jamie Shamonki 31:10
Well, I would, I would tell them about the many families who have used their cells from our bank. And of those families, not a single one of them knew ahead of time that they would need these cells at the time that they enrolled. So you know, people sometimes they think about the likelihood of use numbers, and they factor that into their cost benefit ratio when they're trying to decide if this is something that they want to save for their children. Into that I would say two things. So families whose children used to their bank stem cells are definitely not thinking about those numbers. They're thinking about the 100% likelihood, in retrospect, of course, that their child needed this life saving resource. And the other thing I like to tell people is that over 80% of the units we've released to date, were actually for Regenerative Medicine purposes. Our field and our company are devoted to increasing those use applications. So I can confidently say, and pledge to people that the possibilities that families will benefit from storing these cells are only increasing. We're only seeing new opportunities to improve lives with newborn stem cells every day.
Sunny Gault 32:29
Yeah, and I can say, as a mom, like I said earlier who has done this with their own children, you just never know, right? You just never know what's gonna happen. And for me, it's that extra peace of mind. I just feel better knowing that if something does happen, we have a fallback plan. So thank you both Dr. Shamonki as well as Jessica for being on Preggie Pals today and sharing your stories. If you my dear listeners would love to learn more about Cord Blood Registry, you can visit their website which is cord blood.com. And if you check out their YouTube page, you can see a video featuring Jessica and her family.
Sunny Gault 33:15
That wraps up our show for today. Thanks so much for listening. And a special thanks to our awesome guests, Dr. Jamie Shamonki from Cord Blood Registry and Jessica Holeman. If you love Preggie Pals as much as I do, please consider checking out the amazing businesses that sponsor our show week after week. We'd also love for you to tell another pregnant mom about this resource, which of course is absolutely free. Thanks for listening to Preggie Pals, your pregnancy your way!