Prenatal Diagnosis

Join us in our first episode as we launch our DSDN Podcast! 

Hear from parents about their experiences with a prenatal diagnosis.

Looking to connect with other parents raising a child with Down syndrome? We are here for you: https://www.dsdiagnosisnetwork.org/for-parents-of-children-with-down-syndrome

Transcript

SPEAKER_08 0:05

If you've just received a Down syndrome diagnosis, you might be feeling a lot right now. I know that I did when I received my diagnosis for my son. Uncertainty, fear. You probably have a lot of questions. I know I did. And maybe even a sense of isolation. At DSDN, we want you to know that you are not alone. We want to welcome you to our brand new podcast. It's called From Diagnosis Forward. And this is our first episode. Now, this isn't a typical podcast. You're not going to hear from one host or a single expert voice leading the conversation. Instead, this is a montage of voices and stories from our community. It's parents, a lot of parents, and they're sharing the moments, the thoughts, and the experiences of raising a child with Down syndrome. Because at DSDN, this is who we are. We're a community. We are parents that are supporting parents. Each episode will begin with a question. We ask it within our community and then we bring those answers together here. It's real voices and it's real stories. It's not going to be super polished or fancy. This is just about being authentic and sharing experiences because we know there is someone else out there who needs to hear it. We're starting with the diagnosis and then we're going to move forward as we progress through the first season of our podcast with different topics that we know are top of mind for parents. Now, if you're newer to this journey, maybe you're an expectant parent, maybe you're newly navigating a diagnosis or you know just early on in this journey. Our hope is that you're going to find comfort here. You'll find perspective and connection to and within these stories. And if you're further along in your journey, we hope that you will share your voice when we ask these questions because your story might be exactly what another parent needs to hear today. They might be feeling the way that you were feeling or are feeling. They might be going through or walking through the same thing that you've walked through. They might not even know there's someone else that has walked in their shoes or is feeling the same way that they're feeling. And they need to hear from you today. So to begin, we asked our community for those who received a prenatal diagnosis, what helped you most as you prepared to welcome your baby with Down syndrome? And if that's where you are right now, we're really glad you're here and listening. Now, you're going to hear a wide range of experiences and perspectives in these stories. What each family believes, what they choose, what they lean on, that can look vastly different. These stories belong to the parents sharing them. At DSDN, we are here to support all families without judgment and to create space for connection and to walk alongside families on this journey, no matter what it looks like. You may hear something in these stories that deeply resonates, or there might be some things that don't resonate, and that's okay. Take what you need from the stories and leave the rest. Now let's turn to our community and hear what they have to say.

SPEAKER_07 3:33

Hi, I'm Valerie Weiss, and I am mom to Luna, who is six. I will never forget the phone call from the genetic counselor telling me that prenatal testing showed Luna would most likely have Down syndrome. I had never felt that kind of anxiety before. For some reason, the first person I thought of was Kelly Hampton. I had read her book Bloom a few years earlier, and I felt compelled to email her, not really expecting a response, but she wrote back to me the very next morning. Her email was a game changer. She reminded me that fear and sadness are normal, but what's real is happiness, a beautiful baby, a bright future, and a Down syndrome community that feels like family and one that will embrace and support me along this journey. I was still scared after that, but it pushed me to take a step forward to learn more and to connect with other families. And those connections made me realize I wasn't alone. And that Down syndrome isn't something to be afraid of. It's a life full of so much love and joy. Kelly was right. Over these six years, the Down syndrome community has truly been like family.

SPEAKER_04 4:44

Hi, my name is Tashana White, and I'm the mother of Ariah White, who is three months old. And I remember getting my diagnosis and feeling a little bit overwhelmed. I was happy because I was able to find out the gender, um, confused about what uh Down syndrome was and what that meant for my baby. But I remember speaking to a genetic counselor at my local hospital and them telling me the most important thing for you to remember is that this is still gonna be a baby, and regardless of how you're feeling and what your concerns are, at the end of the day, all this baby is gonna need is your love, and that was also reiterated to me as well in the DSDN app where I was able to connect with other moms. They said, you know, worry about the diagnosis later and focus on just being a mother and enjoying your baby. And to me, that was when I realized maybe I'm just putting a little bit too much stress into this diagnosis, and I need to focus on being a mother.

SPEAKER_02 5:55

Hi, I'm Shay, mom of Mia, who is just three weeks old. Uh, and my experience was that of a prenatal diagnosis via placental DNA testing that both told me that I was having a baby girl, uh, but that also that uh she was 95% chance uh high risk for trisomy 21. And I looked at those results from my phone in my bedroom as soon as I received the alert that they came in. And I didn't really know what that meant. So um then a medical professional, a geneticist from the hospital contacted me and we uh set up an appointment. And at that appointment, uh the news was delivered to me in a very direct and kind of void of emotion manner, uh, as many medical professionals tend to do. They're trying to focus on the facts and prepare you for the worst case scenarios. Uh, but I remember leaving that appointment feeling very heavy and very emotional, feeling very lost. Um and the best thing that came out of that appointment was they handed me a card from my local Down syndrome association. I contacted the director who was very upbeat and excited to meet me. She set a date and time for us to meet at a coffee shop and brought a mom and her adorable daughter uh who was two years old and had DS. And you know that saying about people will forget, they'll forget what you did or what you said, but they'll never forget how you made them feel. Well, I couldn't tell you what all we went over and that coffee meetup. All I can tell you is that I left there with a completely different outlook of hope, happiness, excitement for the possibilities and the awesome community my daughter will get to be a part of. And if I could give any advice, it's find that supportive community right away. Uh, even if it's with a web search for DS resources near you, um or whatever that you have uh there locally. Uh, but find that upbeat group of parents uh and build your village of people with a love and light, can-do mindset. It's the best thing you will do for yourself and your child. I think most parents learn the lesson too late uh that we are not here to mold our children into who we want them to become. Uh we are only here to love and support them while they show us the amazing individuals that they choose to become. And I sit here uh holding my daughter while I record this, and I am nothing but excited for the endless possibilities and for her to show me her passions and dreams for the future that she chooses. And I'm just here to support and love her every step of the way. And uh that's all we're here for, that's all we can do.

SPEAKER_00 9:26

Daniels, my son who has Down syndrome, is Augustus Daniels, and he is three years old. We received the news that we might have a child with Down syndrome in utero, and we were advised to do an amniesthesis to confirm the diagnosis. My initial response was no immediate. I didn't want to take the chance of having um a miscarriage, and I said to my wife, I don't care about the diagnosis, that's my boy, and we should just continue with the pregnancy, which we did. Friends and family uh gave us lots of horrible advice. One person that's no longer friends with us told us to have the abortion. Um, another guy asked me if I didn't think that it was some sort of punishment from God. It was just horrible. We lost friends, we decided we didn't care, we had the baby. Um, during that time, uh something flipped in my mindset, and I thought to myself, you know, it's not us that's the uh being punished by God, it's actually the flip, it's the the reverse of that. Where I said to my wife, you know, maybe God is giving us the responsibility to be the blessing for the child. Maybe that's the the way to look at it, in which that's what we did. So we had the baby, he was born, I will never forget it. I was in the in the hospital room with my wife during the labor, during the birth. Um, the doctor handed him to me first, so he was I was the first thing he saw. He was born with his eyes wide open. Um, he was staring around, he was looking at me, and I knew in that moment uh we hadn't made the right decision. Um, and I would advise anybody in the same circumstance that we are in to just completely ignore all the noise, all the nonsense that people talk, the horrible comments that they make. Um, take the diagnosis out of your mind and think only of what's best for the child. So take the diagnosis of Down syndrome out of your equation that's got nothing to do with anything. Many kids with Down syndrome unfortunately do have other um complications and other health issues, and those issues on their own merits should be the concern, not the diagnosis of Down syndrome. Down syndrome kids are amazing. My son is awesome, he's taught me a lot. I learn from him every day, and he's just the happiest. Um he's just super awesome, happy, enjoys life, makes me enjoy life more, makes me slow down and actually uh touch grass, you know, and think about things in a different way. He's also inspired me to uh get my life coaching certification, and I focus all my energy in life coaching on parents who are in similar situations to what we um were in and having a hard time with the situation, and I try to help them. So it's been an inspiration all around, and it's just made our lives better.

SPEAKER_06 12:20

Hi, my name is Cassandra, and I am Julian's mom. When I received uh prenatal diagnosis for Down syndrome, I remember feeling overwhelmed and honestly really scared. A lot of the information I was given, especially from doctors or online searches, felt heavy and focused on the challenges. It really didn't leave much room for hope. What helped me the most during that time was finding real stories from other families. Seeing photos, videos, hearing parents talk about their children with so much love and joy really shifted my perspective. It reminded me that a diagnosis wasn't the end of something, it was at the beginning of something beautiful. And those stories really helped me see that there would be magic in my child's life and there would be laughter, connection, and so much joy. And when my son was finally here, that is exactly what I experienced.

SPEAKER_05 13:28

Hi, my name is Tiffany, mom to Easton, who is 19 months old. I remember receiving um the results at a doctor's appointment. Um, the doctor was going over my NIPT test results, and we found out that Easton was going to have a 90, there was a 95% chance that Easton would have Down syndrome. I remember being scared and um just not knowing what that was going to look like. Um, so I think I cried that day and probably the next, but I um I'm a very solutions-based person, and I think I attribute that to my background in social work. So I think I started reading, um, talking to people. I had a friend that I went to high school with. She has a daughter that has Down syndrome, and she helped me a lot. I quickly got in a Facebook group. Um, and you know, just like I said, reading and talking to people, and that is what helped me, and that is what continues to help me.

SPEAKER_03 14:28

Hi, I'm Tony, mom to Tabitha, who is six weeks old. I remember when we first received her prenatal down syndrome diagnosis, and I'll be honest, I did grieve at first, not because of who she is, but because I had to let go of the expectations I had for motherhood. And after three previous losses, I didn't take this pregnancy for granted. What really shifted things for me was my faith. I had to choose daily to trust God, even when I didn't fully understand what this would look like. I kept coming back to the truth that she was created on purpose, with purpose, and that gave me so much peace in the middle of uncertainty. One of the biggest changes for me was learning to move out of fear and into connection. So I started praying over her, speaking life over her, and slowly just receiving her as my daughter, not a diagnosis. Now, six weeks into having her here, I can honestly say God met me in every part of that journey, even the grief, and he's still meeting me now as I walk this out as her mom. Every child deserves love and acceptance, and I believe God created her fully worthy of both.

SPEAKER_01 15:33

Hi, I'm Trish Robinson, mom to Joseph, who is seven. My pregnancy was a complete surprise at the age of 45. And while I was still trying to just process being pregnant, I received a call from a nurse saying that my lab results had come in and there were a 98% chance of trisomy 21 for the child. And I needed to come into the office that day to give more blood work because they were referring me out to a fetal maternal doctor. After that, it was just crazy. I felt so overwhelmed, and I kept hearing lots of I'm sorry, I'm sorry, I'm sorry from everyone, from friends, family, and medical professionals. It wasn't until after his birth that I found DSDN, and I finally began to get connected to other moms who were going through the same thing, and also hearing congratulations.

SPEAKER_08 16:40

If you received a prenatal diagnosis recently, if you are pregnant, expecting a child with Down syndrome, I just hope that you found a sense of encouragement and maybe a little bit of hope that you weren't feeling before. Where you are in this journey, whatever you are feeling right now, you do not have to navigate this alone. If you're looking for additional resources and support, we'd love to be there for you. At DSDN, we offer support from the very beginning. And that includes online pregnancy groups, dad groups, and birth groups that connect you with other parents whose babies are going to be born or were born around the same time as yours. We also can connect you one-on-one with a mentor, or we can connect you to your local support organization in your area. If that's what you need right now, if you're looking for connection, if you're looking for resources, we are here for you. Please just let us know how we can support you best. We also want to say thank you to every parent who shared their story for this episode. Your willingness to be open and honest and vulnerable is what makes this podcast possible. And it's what is hopefully helping another family feel less alone. If you'd like to be part of a future episode, we regularly invite parents in our community to share their experiences and their stories. So we would love to hear your voice. Please be on the lookout for that. In our next episode, we'll be focusing on birth diagnoses, and we'll hear from parents about what helped them process that unexpected news at the time of their child's birth and helped them move forward. Until then, thank you for being here and thank you for being part of this community.