World Down Syndrome Day: Reframing a Diagnosis with Jack's Basket

The first seconds after a Down syndrome diagnosis can echo for a lifetime and the difference often comes down to a few words. We sit down with Carissa Carroll, founder of Jack’s Basket, and Lauren Talhelm, Jack’s Basket Medical Education Coordinator, to talk about what families actually experience when trisomy 21 is identified at birth or through prenatal screening, and why the “bad news” framing can quietly shape fear, stigma, and expectations.

Carissa takes us back to Jack’s birth diagnosis and the isolation that can hit when the message is delivered abruptly or without warmth. Lauren shares her perspective as both a mom to a child with Down syndrome and a sibling to a sister with Down syndrome, plus what it meant to receive a Jack’s Basket packed with trusted resources and a sense of community. Along the way, we unpack the phrases that families never forget, what parents often worry about first, and how a simple congratulations can open the door to attachment and hope.

We also dig into clinician training, including Jack’s Basket’s free CME curriculum on communicating unexpected news, and the real system problems families face today like learning results through a patient portal notification or voicemail. If you work in obstetrics, MFM, pediatrics, NICU care, or genetic counseling, you’ll leave with practical, patient centered communication ideas you can use immediately and a clearer sense of how to connect families to support from day one.

Subscribe for more conversations at the intersection of genetics, disability rights, and lived experience, then share this episode and leave a review to help more families and providers find it.

Jack's Basket: https://jacksbasket.org/

Down syndrome Pregnancy: https://downsyndromepregnancy.org/

Genetic Support Foundation: https://geneticsupportfoundation.org/

Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/

Transcript

Welcome And World Down Syndrome Day

SPEAKER_02 0:03

Greetings and welcome to the CODID Podcast. I'm Katie Stoll, Executive Director at Genetic Support Foundation.

SPEAKER_01 0:09

And I'm Dr. Stephanie Meredith, Development Director of GSF, and the supervisor of our Lettercase National Center for Prenatal and Postnatal Resources.

GSF Flipbook Campaign Update

SPEAKER_02 0:19

Today, in honor of World Down Syndrome Day, we're joined by a wonderful advocate and nonprofit leader, Carissa Carroll, founder of Jack's Baskets, and Lauren Talhelm, Medical Education Coordinator at Jack's Basket. We'll talk about supporting families receiving a diagnosis of Down syndrome and how simple acts of connection can change the entire narrative around Down syndrome. But first, we'd like to share some GSF updates and related news.

Meet The Jack's Basket Team

SPEAKER_01 0:42

All right, so we are excited to share that we are continuing our GSF Flipbook campaign where we are creating visual aids for genetic counselors specifically focused on explaining complex concepts to help patients better understand through both visuals and also plain language explanations because sometimes those concepts can re be really difficult to grasp, and we want to make sure that clinicians and patients have the tools that they need to better communicate about them. So if you'd like to contribute, we would love to have you share and participate in that campaign. And now over to Katie.

SPEAKER_02 1:20

We're so thankful for Carissa and Lauren to join us today. A little background and the introduction. So after the birth of her son Jack, Carissa experienced firsthand how isolating and uncertain of Down syndrome diagnosis can feel for new parents, especially when the information and support they receive is limited or framed in a negative way. Determined to change that experience for other families, she created Jack's Basket, a nonprofit dedicated to improving the Down syndrome diagnosis experience and connecting families with resources, support, and a community through beautifully curated gift baskets, including our own Down syndrome pregnancy books and new medical training programs. Jack's Basket is partners with healthcare providers to ensure that families receive not just information, but hope, connection, and celebration. Today we'll explore what families experience during those first moments after a Down syndrome diagnosis, how medical education and community can reshape that experience, what providers can do differently to better support families, and how each of us can play a role in ending stigma and building belonging. Whether you're a parent, provider, advocate, or simply someone who wants to make a difference, this conversation is a meaningful way to reflect on the spirit of World Down Syndrome Day.

The Shock Of A Birth Diagnosis

SPEAKER_01 2:30

So happy World Down Syndrome Day. And it we're actually a little bit past it, but what's interesting is that it is actually Jack's 13th birthday today, and it is also the anniversary of the first Jack's basket delivery. So this is a special day to get to join Carissa and also Lauren on having a discussion. And so I I think what I'd like to do is go have Carissa take us back to when Jack was born. And you know, what do you remember most about those early moments of receiving his diagnosis?

SPEAKER_03 3:02

Well, first and foremost, thank you so much for having Lauren and I on the podcast. It is a significant day. No matter how old our kids get, right, we can kind of go back to what that experience was like. And I now have three kids, and certainly going back to the night Jack was born and we received the birth diagnosis, it was given to my husband while he was alone. It was really abrupt and insensitive. He was waiting. I was in recovery. The nurse practitioner walked in and, you know, first word she said was, Are you aware of trisomy 21? Listed off characteristics Jack was showing and kind of just left the room. And Chris had that responsibility of sharing that life-changing news with me. And I was just filled with so many thoughts and fears and shock and questions. How would this affect our two-year-old? So many things. One thing that was not a part of our story, no one congratulated us. And we just gave birth to our little boy. And um shortly after, the day after, I always talk about this when we were presenting to healthcare clinicians. Diane walked in and she was a nurse and she said, Look at your precious baby. And when I feared the world wouldn't accept my son, because now he has an extra 21st chromosome. I my mind was flooded with all the things about Down syndrome. And she reminded me, he's our baby. And as 13 years have now passed, I always say I've learned a little bit about Down syndrome. I've learned a lot about Jack. And he's our son. He is a brother. He's a classmate, a teammate. It just continued to, as we fell in love with him and giving ourselves this grace in our response. Because the unexpected, if it comes in a Down syndrome diagnosis or fill in the blank as we continue to experience life, it can range based off of our lived experiences to that point. So I will never forget. And all of us that have received, we know if it was prenatal or uh postnatal diagnosis. It it changed. Everything changed. It's a life-changing diagnosis. And I can confidently tell you, no matter what, like how those first emotions were, I would not change Jack if I could.

The Words Families Never Forget

SPEAKER_01 5:33

Yeah, I think you know, that moment when we find out is that term is that flashbowl memory, right? Like it's it's seared in your brain forever. And what people say that's either, you know, negative or positive stays with you. And I know that, like in my case, you know, you had the nurse experience where that kind of shifted things for you. For me, I think my doctor was pretty neutral, but they had uh support staff who worked in the hospital. And this was back in 2000, so they were actually pretty forward at that time. But she was a mom and she came in and gave us, you know, the at that time the book's the book Babies with Down Syndrome. But the thing that really changed everything was her showing us a picture of her son on a bike. And for me, that was such a transformational moment to realize life could still be fun, you know, and and I think that's really important. And um what kind of messages, both positive and negative, stood out to you during that time? And that's actually, I I do want to open that up for Lauren to answer too, because Lauren's a mom as well. And just kind of uh to think of, you know, what what are those things that are seared into that flashbowl memory for you?

SPEAKER_00 6:49

Um yeah, I'll go ahead. Like Stephanie mentioned, um, I have a son, Hayden, who he'll be seven this summer, who has Down syndrome. Um, I also have a sister, Angela, who will be 25 next week who has Down syndrome. So I've kind of I've been in this world for a long time. Um, I'm 13 years older than Angela, so I remember a lot from her story as well. But I think um I always share like one of the most meaningful things. We had a birth diagnosis with Hayden, my son as well. Um, but one of the most meaningful things that was said to us was from um the genetics physician that met with us, and she was kind of just like, don't give up your hopes and dreams for Hayden because he's gonna be able to do anything he wants to do in the future. And I've kind of learned now that we have a second child, like that's how all kids are. Like Hayden's not gonna kind of like follow the path that I originally thought he was going to, and neither is our three-year-old Natalie. Um, everyone's different, and as they become who they are, that's like the path that they're gonna follow. And I think that was just really important for her to say to us. Um, just that he's gonna be able to do kind of whatever he wants to do in the future.

SPEAKER_03 7:53

Yeah, I can recall you mentioned that whoever is caring, like if it's they're delivering the news or they're caring for us after, you know, with I mentioned Diane the nurse, knowing she's like, Yep, I know he has trisomy 21, it was just a different feel than everyone else. It almost felt like, hey, I know that everybody here knows that I got this unexpected diagnosis. And in naturally in my life, I'm kind of the rallier galvanizer kind of connector. So it was almost like I felt like I was like, are you guys okay? Because I'm I'm trying to figure this out. And I was kind of going off of, you know, who I last interacted with. And in that time, and it's a good reminder, when somebody is going through this, no matter if they are a strong driven, however, it's how are you showing up to give them hope when we don't know what's ahead? So it can tie to those providers that are like, hey, you might not know the future, but what they need to know is they're not alone. And that's the thing that was the best resource to me was other parents that could relate that no matter what response I had, emotionally, no judgment on my thoughts or my questions, but they were like, hey, um, they gave us hope that the feelings we were having right now, they were a part of the process of you know, the experience, and he will change you for the better. So it I kept connecting with more and more parents that I could trust to say he is a gift, he will change you in the ways you didn't even know you needed. So that's some positive experiences. There were certainly people, the people that responded with the I'm sorry, they didn't know anyone with Down syndrome. So they were kind of just going off of what their assumptions. And as I've learned this, it was like they didn't know of this love and joy that we now get to experience every day in those we know with Down syndrome. So it's created this opportunity. It's opened up a everyone's learning. And, you know, some that comes out in different ways, but um certainly what we needed in that moment where it was people to give us hope and celebrate our baby, even if we weren't quite ready to celebrate at that time.

Moving Past The Bad News Frame

SPEAKER_02 10:33

I appreciate so much that perspective that everybody's learning. And I think that people are are trying, I think, oftentimes to figure out what is the right thing to say and and how to support a family member or friend or a loved one with with a new diagnosis. I I really appreciated your comment about the questioning of like, will this world accept my baby and how much like healthcare providers have a role in that just initial questioning, right? I mean, you're how a provider responds is I think kind of can set the stage for that that concern of acceptance. It's really it's really relatable. I mean, I think every parent wants to know that their child's gonna be accepted and loved in the world, right?

SPEAKER_03 11:17

Absolutely. I will say that when people ask in the years that we've known Jack, the hardest part about this journey has not been my son. It's been navigating a world that is not accepting of him. And the exhaustion of the advocacy that he just has worth and value because he is who he is, right? We live in a society that kind of says, based off a certain criteria, you have value. And he reminds us that everyone has purpose. And that's the part where that's the narrative shift. Because I saw all of my friends that were trained in healthcare to say if they were delivering the diagnosis they were told, I'm the bad news paradigm. I I'm sorry, you know, and that's the part where my background in education was when I became a teacher, I was given all these teaching strategies to engage my audience. Yet my friends in healthcare are so smart and they get all the information on what it is, but they don't know how necessarily to communicate it in a way that the patient is going to hear it, right? Because there's words that carry heavy, well, they carry bias. Because when you say I'm sorry, and I'm at home looking at my child on a new unexpected journey, looking like I'll say to my husband, you know, I remember the first days, like, I don't think he looks like he has Down syndrome today. Like, I think somebody's gonna call and say his karyotype is wrong. I was in the denial stage. But ultimately, if I would have had more and more people that consistently told you, I'm gonna be a champion for your family and your baby, and I'm gonna connect you and give you the best care along the journey because your child with Down syndrome deserves great health care and great opportunities, just like your two other kids with one less chromosome, right? Like we just presented yesterday to a group of dental students, and again, kind of a different message than we do in our work um at Jack's Basket with medical providers, but it was like, hey, there's a percentage of our population of people with different abilities. Are you gonna say, I'm not gonna care for those dental patients? That's the whole part of bringing this narrative. How we choose to welcome and celebrate these babies from the beginning impacts opportunities for the lifespan of in our community in big, big ways. And that's what really in Jack's first year drove my passion to say, I've heard too many families say they heard I'm sorry, or all the assumptions about what was ahead and they deserve better. So we decided to do something about it.

How Jack's Basket Started Growing

SPEAKER_01 14:13

I think too, you know, and first of all, it's been so amazing what you've been able to accomplish over this time. So it's been 12 years, right? That we we can keep track of that really close because of the birthday. And I because I think a lot of clinicians, when they say I'm sorry, in their head, they're thinking I'm being empathetic right now. What they don't understand is that to the family, what they hear is, I'm sorry about who your child is. And that carries heavy weight for a lifetime, really. And so that's why I think your message is so critically important. And also, you know, just wanted to kind of know how you were able to shift from being, because it's it's a it's a real shift from being uh a parent to then an advocate helping other parents, you know, how you were able to marshal your resources to do that. And then also how different does it look from what you originally envisioned? Because I imagine, I don't know, I'm sure you had expectations of it being amazing, but I think it's been in truly incredible.

SPEAKER_03 15:15

Thank you. I feel like I it's probably how even before Jack's diagnosis of I've always been an advocate for something, if it was what led me into teaching or whatever, but I found people that were much smarter than myself and connected us all together that had a passion to say, hey, if it was their own personal experience or they believed that we all deserved better, kind of rallied together, connected with some people, and said, certainly reflecting back on the night Jack was born was there was a lot of tears. And I thought, what a way to celebrate his first birthday by going and giving hope to a new family. Because those families before me, farther on the journey, gave me hope. And because I knew, and with both my husband's background and education, I knew there were resources out there, but I thought, wait, people are confused. One, where do we send them? There's so such a variety of wonderful Down syndrome organizations from local to national. Let's put it all in one place. And let's also make sure it's a balance, not overwhelming with all the information about the diagnosis. We remind them that this is their baby. So people were donating blankets and booties and gifts and all kinds of stuff. And it's obviously evolved to what is now in every Jack's basket, but I really didn't want it on the family to have to do the work to go find the resources and really linked that to my friend, my friends in healthcare of like, hey, what would help you? I feel like there's a great need that we want to be an extension of care and a link to the supportive community. So never expected beyond Jack's first birthday to grow to how we have. And then people just said, hey, would you help us out here? Or how do you get these providers? And I said, you know, we we probably are at a point we can expand nationally. And then we were just getting requests for babies all over the US and then all over the world. We recently celebrated our 13,000th baby in 62 countries and have reached babies in all 50 states. So Lauren could probably speak on because she's a basket recipient, but I will just always tell you that it has been because of a team of people around me that helped and encouraged me to keep advocating and connecting with if it's medical providers, the community, and saying, let's do this better because our future families deserve better.

SPEAKER_02 18:06

Lauren, can you share a little bit about your experience receiving Jack's Basket?

SPEAKER_00 18:10

Sure. So after Hayden was born, like I obviously was already connected to the community because of my sister, but I still, you know, took the Googling route to see what else was out there just in terms of resources. And that's where I happened to find Jack's Basket. So we requested a basket for our family, got it when Hayden was probably about two months old. And my thought, I was just like, this is awesome. Um, it just had so many great resources in it. Just thought about like how my parents would have loved that. I guess at that time it would have been 18 years before. Yeah. So I kind of just wanted everyone to know about Jack's Basket because it just kind of gave you that sense of hope, like there is this huge community out there, and all these resources, like beyond Jack's Basket, like the National Down Syndrome Society and Down Syndrome Diagnosis Network, and just so much that was out there in Gigi's Playhouse. Um, so I can just imagine how helpful it is for families who haven't been in the Down syndrome world. Um, so then after that, I did um so we have volunteers that are all across the country. We have about 250 right now that are either regional lead parents or basket delivery parents. So I did become a regional lead parent because previous at the time I was working in graduate medical education. So I have that connection to the healthcare community of how can we tell more providers about this? And then also helping with delivering um the baskets to families. Now I did a lot more remote connections because at the time we weren't delivering a lot in person because of COVID or would just do like a basket drop-off. But it was just really great being able to connect with those families. Um, this past Saturday on World Downstream Day, we had a local event and I saw a lot of the families who I've delivered baskets to or reached out to. So it's just really great to make that connection. And yeah, and I'm just grateful to be able to do this work every single day as the medical education coordinator.

Training Clinicians With Free CME

SPEAKER_02 20:00

That's amazing. Can you um so so Jack's Basket has that medical education curriculum? And um and I I forgot to mention in the in the introduction that you had background working in graduate medical education, which is incredible and I'm I'm sure been really important in supporting that outreach with Jack's Basket. But can you talk a little bit about the curriculum that you provide help clinicians in delivering a diagnosis?

SPEAKER_00 20:24

Yeah, so we um so we have a curriculum that's available online um for providers to take for free CME credits. And um, it just really aims to explore the differences between delivering bad news and then delivering unexpected news, like the diagnosis of Down syndrome. And in the curriculum, it shares strategies for compassionate delivery, um, for navigating the different emotions that they're gonna come across. Like in our case, we were just kind of like, okay, yes, Down syndrome. Like so, so does Angela. Like, not that we weren't shocked because we were, but our reaction was a little different than someone who maybe had no idea what Down syndrome even was. And then also just kind of teaching the um medical providers taking the curriculum how to like foster trust with the patient. And while they take the curriculum, um, they can kind of reflect on their current practice. Like it shows some videos and then give some time for reflection. So we have that curriculum, but on top of that, we also have our communicating unexpected news presentation, which is about an hour long, that we give a lot of the time virtually to a lot of different groups. So residency programs, fellowship programs, um, OBGYN departments, um, NIPU nurses, just so they're aware of the basket program so that they can request baskets for their families. So we've given this presentation in a lot of different settings this past November, which some people hopefully are listening to this podcast attended at the NSGC conference. We led their breakfast symposium. It was our first like really big national presentation. And then also out on our website, we have Have two webinars that providers can take first free CME credit from that is very similar to our communicating unexpected news presentation.

SPEAKER_02 22:08

I was at the NSUC presentation, it was great. And I I think standing room only, it was it was well attended. I hope you guys got a lot of good feedback from the genetic counseling community too.

SPEAKER_01 22:20

Yeah, I think I I told you all that it's it was such a breath of fresh air, really, because so often those lunch and breakfast symposiums are run by for-profit companies. And it was really nice to see the nonprofit patient advocacy representation there. I think that was really meaningful. And wanting to know following that, you know, and especially with the curriculum, what responses have you have you received from clinicians as you've been trying to build those connections?

SPEAKER_00 22:51

Um, we've received really great contacts. Um so kind of what I did is I looked through to see what students were attended the presentation and also who did our booth afterwards. And we've made a lot of connections with the program directors for the different programs across the country, and we've given a few presentations to those groups. I just personally feel like the best way for us to reach providers is to reach them early on in their training. So whether it's a medical student, a resident fellow, or a genetic counseling student, just so they're they're learning about us right away and they're really learning those skills of delivering that unexpected news, and then they can share Jack's basket with their colleagues or maybe a physician that they're rotating with. So I think that's probably the largest impact I've seen from us, at least in like in terms of our medical resources from us giving that presentation, and then just also the increase of basket requests from genetic counselors. We have definitely seen that as well because it just made more people aware of Jack's basket and the resource that we can provide. And what's nice is any anyone can request a basket. So even if it's a student on a rotation, they can request the basket or say the family's not ready to receive the basket yet. The provider can give them the resource of Jack's basket, and then the family can request it for themselves when they're ready for that. So it just really opens a lot of doors of opportunity.

Reaching OBs And Prenatal Testing

SPEAKER_01 24:12

Yeah, I found those genetic counseling programs really are trying to build up the understanding of how to sensitively deliver a diagnosis and also broader understanding of disability because we do a number of presentations too about the history of disability rights and how that's impacted outcomes. So I think it's a really good follow-up to also talk about how to improve the that diagnosis experience too, in collaboration with that. I think what's been challenging to me, and this is actually genuine brainstorming with us right now, is I feel like the harder community to try to reach has been obstetricians because there's so many of them. And uh, and a lot of times they are that first point. What are some of the things that you all are doing to kind of troubleshoot that? Or if if you're seeing some of the same challenges in that as well?

SPEAKER_00 25:06

I'm gonna sound like a broken record, but I'm gonna go back to just reaching out to like the GME programs, um, the graduate medical education programs, and really just starting with those residency and fellowships to educate them on how to deliver the diagnosis and also just being able to show them like the lives of individuals with Down syndrome. Because I think that's where a lot of times they don't see babies grow up. They don't see the awesome individuals that they end up being. So sometimes they do have that bias or that unconscious bias when delivering the diagnosis because sometimes they can see just the medical problem issues that the baby has when it's born or something like that. So I think just showing them um the awesome individuals that they they can be. So yeah, so really just getting in contact with those GME programs to be able to present to them early on and they're always looking for education opportunities for their for their programs.

SPEAKER_03 26:05

I'll just add to what Lauren shared that as you have experience, you know, moving more upstream, knowing the screening test is easily available, oftentimes part of prenatal care, those opportunities to show up if it's conferences or our presentations and oftentimes, yeah, technology is outpacing compassion because these screening tests are coming back via my chart. We are doing a deep dive on our data of how families are receiving this news, which a lot of times is, you know, just sharing that data with our prenatal providers to say, is that how you would like your life-changing news? And there's a little bit of the process side, right? Like we saw it on the postnatal of hey, it shout it out in the room, or when is this family gonna find out? But a lot of times when these types of things, again, why did I have to start Jack's Basket in 2014? It wasn't a new diagnosis, right? Like a part of it is because there was so much disconnect between the community and what lived experiences with this. Same thing for prenatal providers. I have yet to meet a provider that actually felt good about doing a terrible job delivering the news, right? We know that every diagnosis conversation involves a provider, and if we know that families are finding out much more prenatally, this is our targeted audience to say, what are you currently giving, or how is this news being communicated? We also show up at MFM. I mean, we have stories every day, and the reality is, you know, some providers have been practicing for decades and they have nothing to give them. And oftentimes it's just if it's the first, second, third options that are said are tied to, in a sense, a bias assumption about what life is like with a child with Down syndrome. So just objectively having those conversations, not with like our own bias, because now we are biased. We know of this life with somebody with Down syndrome. We personally, I think there should be a lot more people. We're all missing a chromosome, actually, from the things that we've learned. So it is a need for all of us to continue to make sure these prenatal providers are a part of care for a new family, should include all of the information. Right. And that's it's bringing to light that not all information is given to them. So although, like, we might not get to the actual strategy right now on this call, it is something all of us are working tirelessly to make sure that whenever these families find out, I was I was holding my baby where my friend Anna, you know, went through a majority of her pregnancy. She wanted to know early on so she could deliver in a place. It's it's stating it in a way that's saying and asking good questions to help them to say, how are we actually impacting this community by not create not providing resources and support? That's just stopping the the conversation there and letting them answer. Again, I don't think anyone feels good about that.

SPEAKER_01 29:46

Yeah, I agree with you. And when I've like when I've given presentations too, I'm like, nobody goes into medicine thinking, I'm really I really want to traumatize someone today, right? Like they want they usually go in there because they want to help people, but at the same time it happens. And I think part of it is because there hasn't been an infrastructure of support for them. And they're also that means there's no infrastructure of support for the families. And I know that you, you know, I had I had known you guys went to the maternal fetal medicine conference, which I was super excited about. And also you had your people article, which I think raising public awareness is such an important piece of it because, you know, that also reaches providers. But I did not know about some of what looking into my chart, which I think is the new kind of frontier that needs to be addressed because we definitely have people. I I found out about that more so at this last Down syndrome diagnosis network conference where you know some of the families were saying, Yeah, I I didn't even get told by my doctor, it just popped up in my MyCart and how upsetting that can be for people. Um, but I'll let Katie ask her next question. I just I find all of that so fascinating and so excited about the work there.

SPEAKER_02 30:57

I was thinking in the prenatal context, there's a lot that's not said that I think kind of is related to that bias, right? And I think sometimes I think pr prenatal care providers and patients, I mean, all of us I think can be a little unaware of some of the messages that just come in the way that care is delivered. I was going to share a diagnosis story for uh somebody close in my life who was expecting their first baby and they had a loved one who had a baby with Down syndrome, was a diagnosis at birth. And initially my friend didn't know the the baby had Down syndrome and they were really struggling. And I went to talk with them. They knew what I did as a genetic counselor, and I said, Oh, I just didn't feel so bad. I said, congratulations. I didn't know that the baby had Down syndrome. I was like, Well, congratulations is exactly what you should say. They had a baby. And I said, What do you know about Down syndrome? And they said, Well, we know it must be something bad because our doctor has done tested our pregnancy for it, you know. I mean, just to hear it so clearly, like this was the implication to them. They had no other experience or understanding of Down syndrome at all, just the fact that this test was offered implied something there. And I think so there's a lot that's not said. And I think sometimes, you know, people working in OBA care might be kind of unaware of the messages that can come from those the lack of information that's even provided when you're offering a screening test. Like what is behind that? And I also just wanted to share an idea as we're brainstorming. This is something that's been several years since we did this, but I thought it was a pretty effective model. And I think about your regional network of Jackson Basket families and now your growing network of genetic counselors that are all over the country. I thought a really effective strategy for reaching out to the OB providers and some of the communities that we were supporting is that I was able to connect with a mom who had had not a great diagnosis experience within our community through hospitals that I was connected with and worked with could schedule like a lunch and learn or grand rounds. And we would give the presentation together. So as you know, a provider that was working in that system and as a as a family who had experienced and so it was kind of a team presentation. And I think your presentation in NSGC was a little bit like that too. But I wonder if getting into local communities and kind of, you know, maybe maybe you're already doing this, but you know, with with such a great network, Jack's Basket has, that might be a way to kind of expand on the education outreach too.

SPEAKER_00 33:31

Yeah, we do some of that through our parent volunteers. Like we say, like our regional lead parents, they're kind of our volunteers who really want to get involved with the medical outreach portion. So they will take like a provider pack or say they're going to visit their pediatrician or their six-week follow-up or something like that. Just bring that information with them and say, like, hey, do you know about Jack's Basket? And then they give the provider the opportunity to set up a meeting with me to learn more. So that is kind of one way that we try to get the word out more about Jack's Basket. And then during our presentation, we um so typically when we're doing it virtually, like obviously Chris and myself will share our stories as being parents. We will have one of our medical team members is on that really talks about the communication strategies. But we do try if we happen to be traveling someplace, we might have a local parent. Um, normally the one who helped us make the connection with that hospital will present with us to that group. Or even when we used to present um at the hospital that I worked at before, I would present locally with Carissa and one of our medical team members as that parent voice in there. So we have had those situations where we have presented with local parents and then just having them share their stories.

SPEAKER_03 34:46

And just to give a number on it, Lauren, we have about 25 presentations scheduled with providers this year.

SPEAKER_00 34:55

Yes, that's correct. Um we have about 25 to 30 already scheduled for this year that we're very excited about to reach. Um, and a lot of those presentations they're with new groups who have never had us do a presentation before.

The Ideal Diagnosis Delivery Moment

SPEAKER_03 35:08

Going back to that prenatal conversation, we saw also the need. We have our team of medical team members on our, like they're volunteers, and we meet quarterly. Lauren leads that team. We saw a gap between OB and MFM, too, of when these families would find out if it was through my chart. We have a high percentage of families that find out via voicemail. Because if you think about your healthcare, you can click that box and things, and you're just like, oh my gosh, you heard this in a voicemail. Again, it's a it's a talking point in our presentations that says, you know, is that best practice for delivering this news? So a part of also your OB potentially might be the closest person that you, if they've cared for you with another pregnancy, you, you know, that following you along for most of your pregnancy, depending on your health system and that clinic. But there was a disconnect between the care between your OB and the MFM. A lot of our families didn't let their OB know about their care with their MFM. And so we said, by the time that you reach, and it feels like an eternity between that OB confirmation screening test to then getting to the MFM, we created a prenatal consult film. Because we all probably can remember looking for families to give us hope if it was a video, a story that showed someone with Down syndrome thriving and living their life. So we wanted to make sure we had four very diverse experiences of receiving the news and what their lives look like now, to delivering at home on the back deck, um, unexpected, like delivery fast, to a family being in the hospital for a good portion of the first year of their life. And so our team is constantly thinking about where is the gap, where is the need, what are the things that are going to help equip these healthcare clinicians on the delivery of the news? What does our Down syndrome community need? We partner with so many local Down syndrome organizations because they're supporting the families for the lifespan of the individual with Down syndrome. And oftentimes that gets missed of like, get these families all the things that they may need because it's such a variety. And let's continue to share powerful stories about how our lives are better because of someone with Down syndrome. So that kind of tells you the three big areas of our mission. That's what's led to a third of our basket requests being by providers. And right now we're on pace to celebrate 2,500 babies with Down syndrome this year. And so we're just wanting to make sure no family leaves the clinic or the hospital without a connection to and hope and celebration for their this new journey.

SPEAKER_02 38:17

Krista, if you could craft the ideal diagnosis delivery scenario for a newer expectant parent, what would it look like?

SPEAKER_03 38:24

Well, with hearing thousands of stories, I would if it was a prenatal or at-birth, if it's congratulations on this new, you know, expecting a new baby or if the baby's here, you know, if it started out with we have some news that may be unexpected in in presenting that in a way that is not have bias, and to say, you know, we're gonna navigate this and we're going to come alongside you and get you the resources and whatever you need. But ultimately, to have an empathetic clinician that's gonna say, I'm gonna be a champion for you and your family, that's what I think all of us desire on both sides. The the community, the family, and also these incredible individuals that have really devoted their lives in healthcare to serve other people. Not for their own, we're hopeful. I mean, we can all make it about ourselves. It's about serving other people. I do believe it is possible. And I do believe it's what our world needs. And if there's anything that we've learned from people with Down syndrome is unconditional love. We might not get it right all the time, but to understand that we're all we have the best intentions. Sometimes the the situation needs a hug. Sometimes it needs a, hey, I, you know, whatever it is, but I will say Jack has been one that's reminded me that he'd be the first to forgive anyone that didn't get it right, that didn't celebrate his life or those of those that are like him. So he continues to remind me what's important in life, and it keeps driving us to ensure that the story starts differently.

SPEAKER_01 40:10

I love that so much. And really, those are simple steps to take that people can do, you know, that clinicians can accomplish. The other thing I tend to recommend to my genetic counseling students is also to ask questions. Ask what does, you know, what does the family want to know about? And then even if if you don't have the answer, don't feel like you have to make something up in the moment, but tell them, I don't know the answer to that, but I will walk with you on this journey and help you figure it out and share resources with you where those people can help you. I mean, you don't have to have all the answers, you just have to be willing to ask the question and to walk with them.

SPEAKER_03 40:53

Absolutely, right? Because that's where we're serving people. And if it's Lauren who ha has her sister Angela, and that's a unique experience, right? And then it almost felt like what I've heard with uh Lauren sharing her story is like, what are you all sad or scared about? My sister has Down syndrome. So you never can assume how the family is gonna respond. And the key is asking questions. How are you doing with this new news? Compassionate curiosity. There was a publication, and that's the part where you're like, if we asked more questions in our everyday life, right, it would help our relationships in communication in big ways.

Pride Hope And Shifting Culture

SPEAKER_01 41:35

Absolutely. Well, and the the research shows that a lot of times what parents think is most important following a diagnosis is very different from what clinicians think is most important. There's a great study that came out about that. You know, if you my I know my concerns after Andy was born, because I was 23 at the time, was, you know, how are we gonna afford the services? I wanted to know, I was worried about other people making fun of him. I was worried about, and again, it comes back to how the world is gonna perceive him. And I was worried about honestly the change in my own identity, which is kind of hilarious to me now because I am so in this world, but but yeah, I think those are all important. So I think one of my, you know, as we're kind of wrapping up, I did want to ask what you're most proud of about your work right now at Jack's Basket?

SPEAKER_03 42:24

You these are tough questions to be like, how do I summarize in in most proud? Honestly, as we've grown and changed a lot of people's stories, I'm most proud that I mean it it comes down to every person, every life, you know, is worthy of celebration. So if it was one baby that we celebrated for Jack's birthday, that would be okay. But to be able to help families see their child as a gift and embrace their child for who they uniquely are is definitely a big moment to say, you know, no matter how you responded, I think helping change the narrative to make the world more accepting of individuals with Down syndrome. All of us on this call, all of us in our community are trying to do that. I didn't think enough on this question to say my most proud. Every day I am just from where we started to where we're at, but it comes down to the babies, individuals with Down syndrome. That's what this is about. That is a really good answer.

SPEAKER_00 43:32

And I'll just kind of echo Carissa. Like, I agree with all of that. And I just think, like, I've only been on staff for about eight months now, but I'm just so proud of the fact like we've celebrated over 13,000 babies. And Hayden was born in 2019 and he was right around baby 1500. And it's just crazy. Like, I know he'll be seven this summer, which I guess kind of is a long time. I still think he's my baby, but it's crazy that we've just we've grown so much just since twenty nineteen and celebrated that. Many more babies. So just really proud of that. And then just really proud of the awareness we have spread about like what's what is Jack's basket. Like I have friends and family, they reach out, they're like, hey, I know a baby with Down syndrome that was just born, or this person I know knows this person and this person, and can I connect to you? So I just think it's really awesome because as once you just start sharing and sharing where you work or the organizations you support or how awesome your kid is, then it just it spreads the word and it really does shift that narrative and and um help share the word about Jack's Basket and then make sure more babies are celebrated.

SPEAKER_02 44:38

And the last question we have for for both of you is what gives you hope right now as you look at the growing community around Jack's Basket and beyond?

SPEAKER_03 44:48

I get hope from hearing from new families that their diagnosis experience brought them hope. The narrative is changing. That's what gives me hope. And it continues to sh our efforts in coming alongside families, along providers. I know that this hard work. It's been a wild ride. It is changing. And it's as we've now seen our very first basket recipients, they are 12 in their schools and seeing just how they're impacting their classrooms, their teams. I do think a part of that celebration starting earlier, them being bold and advocating for them to be in these spaces, it's been a joy. And I continue to hear more stories that my medical provider gave me what I needed in that moment, and that really helped us in those early days.

SPEAKER_00 45:49

And again, I will just kind of echo what Chris has said, but just knowing that we have provided so many more families with hope and welcoming them into this awesome community because it really it is an awesome one. Like I've been in it for almost 25 years, and it's it's truly changed my life. Like I wouldn't be a medical education coordinator for Jack's Basket if I didn't have a sister and a son with Down syndrome. And I love what I do every single day. And I think, yeah, just continuing that celebration. Like yesterday we celebrated um World Down syndrome day at my son's school, and we had a parade with all of the students in the learning support classrooms. Like we decorated little wagons for them, and the whole school was there, all 400 of them in the gym, and they had pom-poms like waving so that the noise wasn't too loud with clapping. And it was just amazing because we're just introducing these kids who are in kindergarten, first grade to these individuals with Down syndrome and just continuing to celebrate them and also just making them realize that everyone has their differences. And that's really what we're there to celebrate is everyone's differences and what they can bring to the world.

SPEAKER_01 46:55

And I think that's so important because all of these kids who grow up end up living and working in the world, right? And I'm definitely seeing that now as Andy's older, where all these people that he's grown up with, um, he's impacted how they view the world. And so I I think you're you're right on there. And I think, you know, in this month of World Down Syndrome Day, uh, we want to really encourage that purposeful inclusion of people with Down syndrome in their schools, at work, uh, and also in these healthcare education initiatives, making sure that their voices and the voices of our families are heard in both our stories and in our preferences for how information is communicated. And my hope, I would say too, is that a lot of this work that is being done in the Down syndrome community is also able to be replicated in other for other genetic conditions through some of the initiatives that I'm seeing also arise in or pop up in those communities because our stories are it's it's compounded in other conditions where they are also wanting to have those kinds of diagnosis experiences where you feel like you're comforted in a blanket by people who care about you and who are able to answer those questions and really explore that with you in ways that are open and not not over not overly negative, but instead giving people that balanced, accurate, up-to-date information. So thank you for all you do.

SPEAKER_03 48:34

Oh, thank you for this opportunity. I think it's a reminder that if it's the Down syndrome diagnosis, if it is something in our lives, to have somebody come alongside you and give you hope, it's something that I always say, what's in your basket? So it's it's kind of a call to all of us that again kind of to live a life of service to others. If that has been one of the best lessons that Jack has taught me, and that is the joy and the light and the love that I feel like individuals with Down syndrome remind us what is important. So thank you for having both Lauren and I today. It's been a joy, especially on Jack's 13th birthday.

SPEAKER_01 49:15

That is such a cool perk. I was so excited when I realized that was the case today. Oh, and a teenager, definitely a teenager right now. Although, on a happy note, I will tell you that today Andy stayed at our house. He doesn't always because he lives part-time with his grandma. I think what a lovely thing that he was laying down on the couch and I got kind of a motion for me to come over there. And he never signs anymore hardly, but he signed a little pleas because he wanted me to come give him a hug. And it just like, what a gift to have a 26-year-old man who actually is very cool and coaches lacrosse and does all the things, but he still he still shows it shows that love and affection to me.

Advocacy Calls And Closing

SPEAKER_03 49:57

Yeah, that's one of the things that Jack just gave his dad a big hug and then a kiss. And I was like, how many 13-year-olds are hugging their dad? And it was just what the situation needed, so it was great. Oh, cool.

SPEAKER_01 50:10

Thank you so much again to both of you for participating. We are so grateful to have you, and more importantly, for all the work you do to make the world a better place.

SPEAKER_02 50:18

Yeah, thank you so much, Krista and Lauren, for being here today. So we usually end on some advocacy calls to action and a call to action for health care providers, genetic counselors. You can support organizations like Jack's Basket by helping to connect local hospitals to their programs and encouraging medical education, their wonderful medical education programs about delivering a diagnosis.

SPEAKER_01 50:41

And then a special shout out to families and self-advocates with Down syndrome who continue to lead the way in reshaping conversations around diagnosis and belonging. There are so many of us engaged in this work. And I'm just grateful for each and every one.

SPEAKER_02 50:57

Yeah, and I'm I'm so grateful for the growing network of providers and community partners that are working to ensure that every family receives support, connection, and celebration from day one. Thank you guys so much for leading the way and for being here with us today. So, our next episode will continue exploring how lived experience and advocacy are transforming genetics and care. We'd love for you to join us, please listen, share the podcast. And we'll see you next time.