I've Just Seen A Face - Toolkit for Caregivers with Amy Mendillo

myFace, myStory

On this month’s myFace, myStory podcast, host Dina Zuckerberg is joined by Amy Mendillo – author, advocate, and parent of a child born with a cleft lip and palate. Amy discusses themes from her new parent guidebook, I’ve Just Seen a Face: A Practical and Emotional Guide for Parents of Children Born with Cleft Lip and Palate, including the roles of caregivers as key advocates in their child’s journey, both in and out of health settings. She also touches on the emotional issues that can arise for cleft parents before and during their baby’s first year of life, such as fears related to bonding, sadness and loss when a baby is unable to breast-feed, and the complex feelings caregivers experience when a baby’s face changes through surgery.

Learn more about the book, I’ve Just Seen a Face, at: www.amymendillo.com. To explore more parent guides and family resources, check out www.myface.org/parent-guides.

[FULL EPISODE TRANSCRIPT]

- [Announcer] Welcome to "myFace, myStory: Voices from the Craniofacial Community", with your host, Dina Zuckerberg.

- Hello and welcome to "myFace, myStory: Voices from the Craniofacial Community". Whether you're watching on YouTube or listening on Apple Podcast, click subscribe now, so you don't never miss a future episode. And if you're a fan of "myFace, myStory", rate and review the program on Apple Podcast, so we can get on messages of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a clef lip, a hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. Today, I will be joined by Amy Mendillo. Amy Mendillo is a writer, author, and advocate. Her book, "I've Just Seen a Face" is a practical and emotional guide for parents of children born with cleft lip and/or palate. Amy holds a master's in public policy from Brown University and master's in bachelor's degrees in music from Northwestern University and the Oberlin Conservatory of Music. She has consulted on state level health issues, advocated for local and city level policy, and worked as a writer-editor for the American Cleft Palate Craniofacial Association, where she currently serves on this family resources committee and board of directors. A proud cleft parent and adoptive parent, Amy lives with her family in Providence, Rhode Island. Welcome, Amy. I look forward to our conversation.

- Me too, Dina. Thank you so much for having me. It really is a pleasure to be here. I am a big fan of this show.

- Oh, thank you. So, can you share when you first learned that your daughter would be born with a cleft lip and palate? And take us back to that day?

- Yes. My husband and I learned about our daughter's diagnosis at a prenatal ultrasound at around 20 weeks gestation. And we had come into that experience with a long history of infertility. We tried for years to conceive and carry a pregnancy, and we ultimately adopted our first child joyfully, and then subsequently returned to the fertility clinic and were able to become pregnant and carry this pregnancy. And we ultimately learned of our daughter's diagnosis at around week 20. And so, at every turn, our history involved bad news. We would, at every ultrasound, at every test, every measure of progress, we were accustomed to hitting roadblocks. And so, when we came into this 20-week ultrasound, we were in a kind of position where we were braced. That said, I was totally taken aback by the news. I remember when the doctor was clicking and blinking and the tones were so soft and everyone was trying to stay, all the professionals were trying to stay calm, but inside, feeling this torrent of feeling and feeling almost sickened and learning this news that our daughter would be born with cleft lip and palate. And I think there were two things involved with that. One that I had heard of clefts. I had heard of, I knew what it meant, what a cleft lip meant, what a cleft palate meant. But I was unaware and my husband was unaware of all the other things that are involved. The hearing can be involved, that speech is involved, the dental health, that appearance is involved, that a baby is unable to breastfeed or consume milk through its traditional manner. That part really felt overwhelming. And also, the element of what other health conditions could be at play, that felt really unsettling. And I know that all of us are subject to health problems and that a pregnancy by definition, evokes a sense of risk. But we're intimately more aware of it now that we had learned this news. And so, we underwent future more tests and ultimately ruled out as far as we could other conditions. A cleft lip and palate can be, as you know, can be isolated, but it could also occur in the presence of a genetic syndrome, meaning that other differences are present at birth. And ultimately, our daughter was born with isolated cleft lip and palate, but that process of undergoing that future, of that testing felt unsettling.

- I think about my own parents. They didn't even have the ability to find out ahead of time. So, they didn't find out until I was born. So, we certainly have come a long way into understanding, at least to know before, which I guess we can talk, we'll talk a little more about that a little later. Can have its positives and its negatives, right?

- Absolutely.

- when you find out ahead of time. So, for those that might not know, what is a cleft lip and palate and how common is it?

- Yes, a cleft lip is an opening in the upper lip, opening or openings. A cleft palate is an opening in the roof of the mouth that occur at birth. The incidents, according to the American Cleft Palate Carniofacial Association, is about 1 in 600 births. But that statistic does vary depending on the type of cleft. And clefts occur during the very early stages of a pregnancy when the parts of the head and face to come together from the sides toward the center and fuse. And so, when a cleft happens, that process fails to happen. So, there's no missing material necessarily, rather a failure of those two parts of the head to fuse.

- Okay. So, why did you decide to write this book?

- Yes. I decided to write a book based on two main observations. One was that that moment of learning the news, that feeling of overwhelm, that the crisis resolved. And after time and with experience, my husband and I realized that that moment was not what the rest of our daughter's life was going to be about. And I wanted to share that idea and with other families who might be similarly worried. And to include a lot of other voices of other parents as I did.

- Right.

- And the second observation was really a little bit more practical, and that was that my husband and I looked for and couldn't quite find an all-in-one current guidebook for cleft lip and palate, something that not only offered basic explanations of the condition and its treatment, but also addressed the myriad questions we had along the way. Both in a practical sense, on the ground, day-to-day questions having to do with treatment and operations and recovery. But that also discussed the emotions that come up during that time. It can be really some very sensitive issues. So, I decided to create one. I have a background in classical music. My first career was as a professional oboist, but I, since I had switched careers, went into public policy with an emphasis on health and research and writing. So, I created this book, which has now finally arrived after many years. It's called "I've Just Seen a Face, A Practical and Emotional Guide for Parents of Children Born with Cleft Lip and Palate, Year One and Beyond". And I know it's a little bit of a cliche to sound, to say that it feels like a birth, but it actually does in my case.

- I've heard a lot of writers say that. It's almost like giving birth to a baby.

- Yes.

- So, I did manage to read a lot of it. I will say it's a lot of information. What I loved about the book is if you wanna just look at this, you can go to that chapter.

- Right.

- Like you said, it's really not meant to be read from cover to cover necessarily.

- Right. Yes.

- But it's a great resource. And what I also love is that you do address the emotional side of it. 'Cause I think that is just as important as well and not always discussed in the day to day,

- Right.

- especially when you're going to all the medical doctors. You're so focused on the medical side of it, but not really addressing the emotional side of it, so.

- It's so important.

- Yeah. So, how did you decide to do your research for this book?

- Yes. The research for this book draws in part from my personal experience. I narrate the book as a fellow parent. And I do include four short personal essays that are interspersed throughout the book about my experience. But it draws more importantly from in-depth interviews that I conducted anonymously with about 150 people, some of which were repeated over time, half of whom were fellow cleft parents, parents of children born with cleft lip and palate. And the other half were providers, specialists from all of the cleft-related disciplines, surgery, nursing, speech, EENT and audiology, dentistry and orthodontics, genetics, pediatrics, and more. I might not be exhausting that list, but my idea was to provide words of wisdom from these folks. It also draws from hundreds of academic articles, medical textbooks, published materials for families and the like.

- Yes, it's very thorough, I must say, which I really liked. That's great. So, when can the cleft diagnosis be detected on an ultrasound? And what are the positive and negatives of finding out during pregnancy, which we just touched on.

- Yes, which we... I'm glad you actually asked about the negatives, because there are some, and clefts can be diagnosed at around week 20 is when they typically surface or are able to be visible on an ultrasound. In many cases, the cleft palate is not necessarily visible at that time, and families sometimes wait until birth to find out if there is a cleft palate or not. In my daughter's case, it was visible, because it was more extreme, I'm sorry, more severe. But the vast majority of folks I've spoken with and the current research points to the positives of prenatal diagnosis. There's almost no doubt among the people I've spoken with that it's a boon in so many ways to learn early, to wrap your head around the diagnosis, to prepare logistically, to really get your ducks in a row or think about childcare. And perhaps most importantly, it's for families to find a team of people and to sign on with a team and really get hooked up with that kind of care. But I have spoken with parents who after expressing so much relief at learning early, also talked about the tender feelings that can come up. Really a fear about bonding, wondering what they'll feel when they meet their baby, whether they will love their baby this way. It can be an incredibly sensitive topic. And the idea of not, perhaps not loving your baby is just, is heartbreaking. And one of them, a parent's main jobs, even if they forego all the others, is to love their baby.

- Right.

- And so, it's entertaining idea that that might not happen, it can be just incredibly profound for some expected parents.

- Yeah, I imagine that's the case. I imagine also that that can be sometimes the case even when you don't have a child with a facial difference. But taking that, just compound it, I'm sure.

- Absolutely, absolutely.

- Another level.

- The research I conducted pointed toward that without a doubt, that the bonding, that the attachment that happens at birth can go either way for parents of children with differences or without. Absolutely.

- So, do we know the causes of cleft lip and palate and is it hereditary or environmental?

- Yes, it is. The causes are still being discovered, but as you mentioned, they are thought to be either hereditary or environmental or both. Genetic causes, meaning anything that happens biologically to a parent, to a pregnancy from a parent to their biological offspring. And environmental factors, meaning anything that happens during a pregnancy that isn't genetic. I always thought of that term environmental as a little bit of a strange one to wrap my head around. But it could mean exposure to smoking during pregnancy, to certain medications, to a lack of folic acid. Those are the three big ones that are mentioned most often. But the cause is still being discovered. And in many cases, the cause is unknown. And that can be a real source of stress for some parents to not know why, is hard to wrap your head around.

- Right. So, following up on that, I know that many parents feel guilty when they learn that their baby has a cleft lip and palate, and wonder if it's something that they did to cause it.

- Right. Exactly.

- What do you say to that based on your research?

- Yeah. My research into this topic of guilt took me to another, an advocacy organization for another condition, ectodermal dysplasia. It's not related to cleft lip and palate at all. It's another condition that is passed down genetically from parents to their biological children. And their discussion and their suggestions for parents discussed the ideas of the difference between the idea of fault and self-blame and the critical element of choice. And they suggest that a parent may be at fault for their child's condition, as hard as that is to sometimes even say out loud. But they encourage families not to blame themselves, because of that element of choice. While they may be at fault, there's no way that they could not and did not choose it. So, it's a lot to wrap your head around with those ideas, but I think it can be a source of reassurance.

- And then, probably in a lot of cases, they didn't even know. They wouldn't know what they were doing

- Exactly, exactly.

- to cause something like that.

- There's no way. Right. So many parents that I spoke with didn't have any family history or any awareness of this at all. That's exactly right.

- Right.

- Yeah.

- But do you think it's okay to have these feelings of anxiety and guilt and shock, and what do you recommend

- Yes.

- for parents that feel this way? What would you say to them when they're feeling this way?

- Yes. Right. Absolutely all of those feelings I think are normal. And the professionals I spoke with echoed it and were really emphatic about allowing parents and caregivers to feel their feelings, whatever extremes or whatever lack of extremes those feelings involve. The ACPA recommends very simply to allow yourself to grieve, to take that time and space. I've spoken with families. I remember one mother in particular said that she found a lot of solace in grieving, and then stopping, so that she can dwell on it.

- Right.

- So that she took the time she needed, and then she didn't want to be lingering over this one thing at the time of her child's birth, which I thought was a really, a thoughtful angle on it.

- Yeah.

- I also take some inspiration from an author, Andrew Solomon. He is just a huge figure. He wrote the book "Far from the Tree", which is a real

- Right.

- monster of a book, both literally and in terms of content about parents and the differences they have. But he writes, "Intimacy with difference fosters it's accommodation."

- I like that.

- I do too. Meaning that the more familiar we are with something, the more likely we are to accommodate it. He uses the word accommodate. You could use the word except, but not necessarily. And so, I think during that prenatal period, it does give families time to become a, just wrap their heads around the idea

- Right.

- of this difference. And I think that can help, I think.

- Yeah, I like what you said in your book, the grieving process can be messy and that messiness is all right, is what I really like.

- Yes, absolutely. I spoke with another professional who emphasized the importance of being aware of the differences of how that grieving process can play out between couples, parenting couples, maybe spouses who can... She said in her office, she sees family members who are responding in really different ways. And for couples to be easy on each other.

- Right.

- And allow each other some grace when it comes to knowing that that process may look really different in your spouse or your partner if you have one.

- Right. That's true.

- Yeah.

- So, can you share with us what a cleft team is and how important it is to find the cleft team and when one should do that? How does one find a cleft team and who it's typically on a cleft team? I know that's a lot of questions in one.

- Yes, it's an important topic. A cleft team is a multidisciplinary group of specialists who care for a child born with cleft lip and palate or another craniofacial condition. Starting from, in some cases, prior to birth through around age 18 or even into young adulthood. Any group of specialists can get together and call themselves a team. But in order to be approved by the American Cleft Palate Craniofacial Association, they must undergo a process, a rigorous approval process. And so, there are about, I think, just shy of 200 ACPA approved teams in the United States right now. And I think about 50 internationally that are also approved. So, the idea of approval really is meaningful in this case for families to find a team that is approved. There are two types of teams. I use the word cleft team in my book and in conversation to mean either type of team, but there really are two types of cleft palate team or a craniofacial team. And their makeup varies slightly, but the sort of rundown of the type of professionals that families may encounter include a surgeon, a speech pathologist, a nurse, a geneticist, a dentist and/or orthodontist, psychology, mental health, EENT, audiology, sometimes social work, pediatrics. I'm not sure if I'm forgetting anything. Excuse me if I am.

- I think you covered it.

- Yes. But it's a critical element in a child's care. And that can be a really, I think a daunting question both for families who may have more than one team in their area and for the teams, maybe especially for the families who don't have teams in their area. I read a piece of research recently that said that more than 25% of kids born with cleft lip and palate in the US do not live within a one hour driving radius, driving distance from an approved team. So, access really can be an issue.

- Absolutely.

- Yeah.

- And I heard of families driving hours to get to a cleft-craniofacial center. So, yes.

- Are even flying. Yes. Taking across the country.

- Yeah.

- Yes.

- And if they have to go off, it can really be a lot in that first year.

- Oh, absolutely. The first year is so intense anyway.

- Yeah. So, I love that you provide a list of questions for the birthing hospital and then for the cleft team. I think it's a great resource, 'cause I know it can be so overwhelming and I've heard that. So, I think having those questions, and I always encourage parents and caregivers to have those questions and also to write those things down, 'cause when you, I think you know, but when you're in those appointments, you can't think clearly and you're not-

- No. It's true. You can't think clearly. The information just drains out of your head as if it never existed in there.

- Yeah.

- Absolutely. And so, I do include a lot of questions in this book, maybe more than anyone needs, but I think that's a good thing, just questions to keep in mind, questions to know about. And I agree, especially hospital-related settings can be stressful and to the point where you forget things like that. I'm a big fan of a having a spiral bound notebook. I know it's old school, but writing things down and asking those questions too and having the courage to ask those questions. And knowing that even the small questions are worth asking, important to ask.

- Yeah. I think sometimes people may get intimidated. They think that they can't challenge a medical professional or they can't, but I think my mom taught me this, but I think it's okay to, if you have those questions, ask those questions to really try to understand, and then to find that team that really resonates for you, that feels good for you, because you're gonna be working with them for a long time, right?

- Absolutely. It's such a close relationship and it's a long relationship.

- Right.

- It's amazing. And it can really feel like family. Right, I absolutely agree with that. In fact, some of the professionals I spoke with emphasize the importance of comfort, feeling comfortable asking those questions. And even if it turns out to be a non-issue, it's good to have asked it.

- Can a baby with a cleft have trouble feeding? And why is that? And how can a baby get the intake they need?

- Yes. The short answer to that is, yes, a baby born with a cleft lip may be able to, a cleft lip only may be able to feed normally from a traditional baby bottle and may be able to breastfeed. But a baby born with a cleft palate is unable to form a suction in the mouth due to the lack of closure between the nose and the mouth. And so, that can be a source of stress for parents. I know the parents I've spoken with were, many of them mentioned feelings of sadness and loss around the inability to breastfeed, especially mothers who were looking forward to that or had really envisioned that for themselves and their baby. But the good news is that it is possible, it's really doable there for specialty bottles available on the market. I go into detail about each one in my book and offer lots of tips and tricks and nuggets from professionals. There are tricks for making these bottles work. There are a lot of parts. They're newfangled and fancy. And the other part of this really, of the good news is that the cleft team is such a reliable resource when it comes to feeding, that there are so many professionals out there who are just whizzes at feeding the baby. And that oftentimes if a family learns about the diagnosis prenatally, they can go in and have a substantial visit with a feeding expert. And they go through all the bottles and you really learn what to expect and hopefully leave that visit feeling really confident.

- So, when does the baby usually have their lip repair and then cleft palate repair? And are there other possible surgeries they might need?

- Yeah. The news of that kind of surgical and treatment schedule can really feel overwhelming. Just even hearing that question, knowing that my response is gonna be pretty long. I remember that feeling of feeling daunted by that. A lip repair surgery, primary lip repair usually takes place during infancy, somewhere between age four and six months. And the operation to close the palate happens later in infancy around age 1 year or 10 months to 1 year, depending on a lot of different factors. But the treatment path is involved beyond that. And I should add that during infancy, there's also the challenges of feeding the baby and the challenges in many cases of undergoing pre-surgical infant orthopedics, which is a type of orthodontic treatment in essence for a baby, that moves the parts of the face closer together to prepare for surgery. And that process can be really involved. But later on in childhood, there are evaluations and possible treatment for speech, operations. Possibly at around age four five for speech, secondary palate repair. There can be an operation during the school age years, age 9, 10, 11, 12 for bone grafting, alveolar bone grafting to shore up the bone in the, that supports the eruption of teeth.

- Oh, I had that.

- Yes. Yeah, my daughter had it a couple of years ago, but that's a big one.

- Yeah.

- And orthodontic treatment that sometimes spans years and can occur in a couple of phases. Possible rhinoplasty during the end of the

- Mm-hmm.

- to reshape the nose. And possible jaw surgery, orthognathic surgery that happens close to the end, as I'm sure.

- I think I had about almost all those surgeries except like how it wasn't affected, but all the ones you just mentioned, the ones that I had. Yeah, yeah.

- It's a long haul. Yeah.

- So, I've heard parents talk about having two smiles and how much they missed the first smile they've known. And did you feel that, and why do you think that is?

- Yeah, I did feel that. Almost from the start, I really did fall in love with my daughter's face as it was, and I felt a real tenderness and almost sense of loss at the idea of changing her face. And I heard that response from a lot of other parents that I spoke with. But I think it's also important to note that not all parents feel that way. I think it's a sentiment that's expressed certainly on social media in some of these private groups for cleft parents. There really are some very robust groups as I'm sure you know, on Facebook,

- Mm-hmm.

- private groups for parents that can be a source of a lot of solace. I know that Facebook has its faults, but I'm a fan of these groups. But in private, I think some parents express or don't express or have expressed to me a feeling of ambivalence that I think is normal and important to say out loud. Some parents feel that they are in a months' long holding pattern and that they are relieved when the operation takes place to change the baby's lip. Some parents are stressed out about interactions in public, interactions with family and friends, the people they meet. And so, there are a lot of different feelings about that. I think it is true that a lot of families do bond with their babies and fall in love with their face as is. But I think there really is a spectrum as well.

- Right.

- Yeah.

- That makes sense. So, I think we touched a little bit on this, but babies, can they have hearing issues with a cleft?

- Yes.

- And what would be a common treatment for that?

- Yes. Learning the news about hearing can be stressful for families, I think, because as I mentioned, they may not know that hearing was related to cleft palate. And also because experts suggest that untreated hearing loss, even mild hearing loss, can cause profound problems for a child's growth and development. But the good news is that hearing can be treated. The most common cause of... There are several types of hearing loss, but the most common type that occurs for a cleft, babies with cleft palate is conductive hearing loss, which occurs when the sound is unable to make it to the inner ear, through the outer ear and the middle ear. I read somewhere, a statistic that up to 82% of babies born with cleft palate experienced this type of hearing loss. But it is usually easy to correct and temporary. And the treatment that is most commonly used is a PE tube, a pressure equalization tube, a tube otherwise just referred to as tubes. I think tubes are one of the most common ambulatory surgeries among pediatric populations in the United States. It's a very common, very well-established treatment, and I think effective and can be reassuring for families.

- I didn't know the statistic was so high, there was 82%.

- Yeah, it's really, it's really... That's the highest statistic I've seen, but it is from some recent research.

- And to build on that, how important is speech therapy for a child with a cleft?

- Yes. The speech language pathologist that I spoke with, when I asked about speech therapy, almost uniformly responded with a yes, but statement, that speech therapy itself can be extremely effective and useful when needed, but not all children need it. And I think sometimes there's an assumption among parents that, oh my god, my child will need speech therapy. When in fact, many of them do, but many don't. And what the kids really do need is timely evaluation and regular evaluations following kind of a schedule that the team recommends. I think during infancy, one of the things to know is that staying on top of the recommendations is key, but also that language development during infancy is an incredibly intense and explosive and active process during infancy, even if families don't necessarily see or hear the results immediately.

- Do you recommend telling family members, especially siblings ahead of time? And what are a couple ways to do that?

- Yes. The professionals I spoke with, especially the cleft team professionals mentioned this, as did child development experts that I've researched, mention the importance of preparing siblings for events in their lives that will be different or disruptive or challenging. And the methods I've come across include being honest with a child, telling them with some time that is developmentally appropriate. And using developmentally appropriate, honest language with accurate medical terms. So, to use the word cleft with a two or three-year-old, to use those words really openly and to, in many cases, consider the developmental stage of a child and what their world might look like. Whereas it might be a big deal. Of course, it's a big deal for a parent to take a child into an operation and how parents want to know all about the operation. It's not clear that the sibling wants to know all that information and may be more interested and what will happen in the house, who will be there, who won't be there, will grandma come and stay with me overnight? And what will I eat for breakfast and who will take me to daycare? Stuff like that.

- So, what is something you wish you knew when you were on this journey with your daughter that you now know?

- Yeah, that's a such a good question. I really feel fortunate that I was confident in the information I received from the team we worked with. My daughter received exceptional care from a really kind and competent team, and we really have felt comfortable with the information we had. But I wish all along that I had had a little bit more confidence personally in my ability to solve problems and really just help my kids along, that I'm fortunate to have been seeing a really good therapist who has an expression, worry equals planning. And so, every time I find myself awake at night, staring at the ceiling, worrying about something, I've learned with time that there really are concrete steps that I can take to help my child, but it's taken me time to acquire that confidence and to be able to rely on myself and know that the worrying isn't always productive.

- I like that. I think that's actually great advice for anybody. I'm gonna actually keep that in mind when I start to worry, that may mean that I need to start planning, so.

- Yeah.

- And I imagine having

- Exactly.

- the book that you created could be a probably would help somebody who may be lacking the confidence that you wish you had, that this book, I'm sure, will help that a lot.

- I hope so, I hope so, I hope so. That's my goal is to provide information and reassurance.

- So, how is your daughter doing today?

- She's doing really well. She's 11. She's going through an orthodontic phase right now, but she is otherwise consumed with finishing fifth grade and playing with her friends, and she's obsessed with horses. And so, it really is a part of her life, but it is not... And an important part of her identity, but it is not her whole identity.

- Right, right. I think that's always, I always say that to kids and others that my cleft and my, is just a piece of me. It's not all of me. So, I think that

- Yes.

- is very important

- Yes.

- to remember.

- Yeah, I like that.

- So, a couple more questions. How important is it to find a community, find support like myFace? I saw that you have an extensive list in your book of organizations and online groups to choose from.

- Yes. It's so important. I think some of these organizations, myFace advocacy groups provide critical services for families, for affected people themselves, for their family members in terms of finding support. As you've mentioned so many times on this show, the telling of stories and the sharing of stories and the community, the communal aspect of interacting with others can be really transformative.

- So, where can people buy your book?

- Yes. It is available on Amazon for 21.95 for the soft cover and 9.99 for the ebook. And also available through Barnes & Noble and bookshop.

- Okay. Well, I hope, I do encourage people who are starting this journey to get your book. And I'm a person affected, not a parent, but I think it is a really good resource for a lot of people that will help on the journey,

- I hope so. I'm so glad.

- so thank you.

- Thank you so much for having me. I love this show and I'm such a fan and it's a real honor to be here.

- Thank you. And it's been such a pleasure to talk to you. And like I said, you have so much advice and wisdom and I know it will be beneficial today, just starting out on their journey as a parent to a child with a cleft and/or palate. So, thank you so much, Amy.

- Thank you, Dina.

- Amy is such an inspiration to me and everyone she meets. Everyone has a story. And I am hopeful that by sharing stories like Amy's, we can create a kinder world. For more than 70 years, myFace has been dedicated to changing the faces and transforming the lives of children and adults with facial differences by providing access to holistic, comprehensive care, education, resources and support that paved the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the myFace support groups, so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to "myFace, myStory" on your favorite podcast app and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of "myFace, myStory". Remember, it takes courage to share your story, so be brave and speak out.

- Hi, I'm Stephanie Paul, the Executive Director of myFace. myFace is a nonprofit organization dedicated to changing the faces and transforming the lives of children and adults with facial differences. We do this through various programs and events such as the "Transforming Lives Educational Webinar" Series, Races for Faces, the Wonder Project, and the groundbreaking "myFace, myStory" conversational series. You can learn more about all of these on our website at myface.org. If you enjoyed today's program, we hope you'll consider making a donation to help keep programs like this possible, as well as to further the support of the craniofacial community. Thank you.