WITH GENETICS COUNSELOR, MARISA ANDREWS
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
GENETICS and reproductive family planning. This is an incredible episode, packed full with so much insight from an amazing expert in the field! Pediatric and Fertility Genetics Counselor, Marisa Andrews, joins Kristyn in today’s episode to share about the world of genetics.
This episode is for YOU if you have ever found yourself struggling with the following:
🤍 Understanding how a genetic mutation can impact a family.
🤍 Deciding how to move forward with growing a family if you and/or your partner are carriers of genetic condition.
🤍 Struggled with infertility and want to learn more about the process of IVF.
🤍 Deciding to have more kids after learning that your child has a genetic condition.
This episode addresses the barriers and obstacles that many rare disease families face in their pursuit to grow their family, but ultimately, it serves as an important reminder that these decisions are hard and that we could all benefit from discussing these hardships more openly.
[Image Description: Light blue background with a white font that reads, “Building a Family Through IVF and PGT with Genetic Counselor, Marisa Andrews.” Framed in a circle at the center of the image is a black and white photo of Kristyn embracing her miracle babies, Ozzie and Luke.]
#Genetics #IVF #IVFjourney #PGT #PreimplantationGeneticScreening #PreimplantationGeneticTesting #GeneticCounseling
Links related to this episode:
National Society of Genetic Counselors
Preimplantation Genetic Testing (PGT)
Episode Transcription
Erica
Welcome to Atypical Truth. I'm your host, Erica Jolene. Humans are storytelling beings. I created this podcast to amplify those stories of people in my community, the community of people with rare diseases, disabilities, and complex medical conditions. Not only will you hear from my peers in this community, but you will also hear the stories from family, friends, and professionals who advocate with us.
My guest host for this season is Kristyn Newbern. Kristyn’s life was transformed when her son Luke was born with congenital heart defects and later diagnosed with a rare condition called Noonan Syndrome.
Today’s topic of discussion is all about genetics. When families are having discussions about genetics, it is important to understand that at the center of these conversations are people who are deeply loved. It could be families who have either a child or a family member who has been diagnosed with a genetic disorder, or perhaps a family member or child that they have lost to a rare disease. It could also be a person who is currently living with a genetic condition and is wanting to learn about the hereditary risks when it comes to reproduction.
Our guest today is Marisa Andrews who spent a decade working in pediatrics as a certified genetic counselor at St. Louis Children’s Hospital. There she supported families who were navigating the process of genetic testing and helped them to interpret and understand the genetic test results. Marisa currently works at the Washington University Fertility and Reproductive Medicine Center where she now fulfills a similar role as a genetics counselor, but kind of on the other side of the spectrum, where she helps people navigate future family planning and reproduction when they are known carriers of a genetic disorder there are concerns about passing that condition on to future children.
Marisa and Kristyn talk about the world of genetics, and Marisa helps to explain the process in somewhat of a chronological order in the way that you might experience if on this journey yourself. First, she touches on genetic testing, the different types of genetic results, and then she explains the process of preimplantation genetic testing or PGT, and in vitro fertilization, also called IVF. IVF with PGT is just one of many family planning options that couples have if there's a known risk of passing down a severe or life-threatening disease.
There is a lot of information that is covered in today’s episode, which is why I am just so fortunate that we have Marisa sharing because she is just so graceful in her explanation of these processes, so you don’t have to have a background biology to understand what she is sharing.
I also want to say that the decision to discuss this topic and share about it so publicly was not a decision that Kristyn nor myself made lightly. This is not an easy topic to cover and I certainly could not have done this without the help of an expert, so I am extremely grateful for Marisa’s willingness to provide us with this educational opportunity to learn more about genetics, along with IVF with PGT.
I am also want to say that I am extremely honored to have Kristyn bravely share about her own family’s journey with IVF and PGT. And in our next episode, which will release two weeks from today, she will be joined again by Nichole Rosenberger where they have an open discussion about the decisions they faced, the factors that went into those decisions, the obstacles they were met with, and the emotions that they carried and really continue to carry through this entire experience.
So I ask that you keep an open mind and an open heart as you listen to these next few episodes. I also ask that you reflect on all the episodes leading up to these. It is important to understand the complex journey that these families have been on and the difficult decisions that they have had and that they continue to face.
I learned so much from today’s episode, but one of the most beneficial reminders that this episode provided was that there are some really compassionate and caring people in the world, people who have dedicated their lives to helping others work through these really difficult decisions. Marisa is just a phenomenal example of that and I am beyond thrilled to share her insight with you today.
Kristyn
Marisa, thank you so much for coming on to this podcast and being our guest today. Very excited to have you.
Marisa
First of all, thank you so much for having me on. I'm really excited to have this conversation with you.
Kristyn
You and I have been through quite the journey together. And you have played such an important role in a very important time in my family's life. So very excited to talk to you more about that. And then we do have to give our disclaimer that Marisa’s opinions today are her own and they do not reflect those of her employer. So with that, let's hop into some of the hard-hitting questions first. Marisa, if you were to be a band, what instruments would you play and what music would your band play?
Marisa
So like many, many young children, I was enrolled in music lessons, piano for me. And I remember liking it and I desperately wish that I hadn't stopped those lessons. But they were on Saturdays at 8 am in the morning and I think my parents got tired of trying to get me out of bed and get me to those things on time on Saturdays. So I eventually dropped them. But if I could go back in time, I wish that I continued with it because I would love it if I was able to play the piano. I think it's such a beautiful, versatile instrument. I actually had a great grandmother that taught herself to play by ear, and she used to play for the local veterans in the VFW, but she would play like rock and roll piano. So I would, if I could do that I would be ecstatic.
Kristyn
I always think that's the most impressive. You know, when a musician is playing by ear, it's just it just seems so inherent. I had piano lessons when I was younger and was very classically trained, right. So I can tell you all about musical theory and technique and things like that. But I was always so impressed with, you know, my friends who they would hear something on the radio and then be able to play it on the piano. And I'm like, “Where's your sheet music?”
Marisa
Yeah!!
Kristyn
I agree with you. I think that's just so cool. So impressive.
Marisa
Yeah, people who just have this beautiful ease with it. And it just seems to be a natural part of them. It's incredible. But yeah, I mean, I was very young at the time, but I was definitely much more, you know, I had to see the sheet music, I was definitely not just picking things up very easily by ear.
Kristyn
You and I share that. Now, if hobbies paid the bills, what would make you a millionaire?
Marisa
I will admit, I am not a person who has a lot of, I guess what you would consider true hobbies. But I do actually listen to a lot of podcasts all day every day. So I guess if I could make money by the hour, I'd probably make the most listening to podcasts.
Kristyn
I love that. And how timely I'm fitting for our discussion today, too.
Marisa
Right!
Kristyn
So tell me a weakness of yours that others might not recognize, but as we all do, we that you might notice all the time about yourself.
Marisa
So it's one that is kind of at the forefront of my mind today, which is that I am very, very conscientious about my communication and my word choice because it's so so important for my job. And I worry a lot about being misunderstood or not getting things across clearly because that was sort of driven into me as part of my training. So it's something that I think about all the time that I hope doesn't come across too much to other people. But I would say yeah, I'm very self-conscious about, you know, word choice and how well that I'm communicating with people. So it's always something that I'm thinking about.
Kristyn
That's a really good point that I think because you do it so well, and you're so…it comes off so naturally because you have this experience, that I would never have guessed that. Just that so it truly is something that you alone, are recognizing, but…
Marisa
I appreciate that. Thank you.
Kristyn
Oh, of course. So Okay. And then finally, what is one thing that you are presently very grateful for.
Marisa
So right now, I would say that I am most grateful for the partnership that I have with my husband. We have a seven-month-old, it's our first baby. And with COVID, and everything else going on, you know, there's a limit in how much you really want people coming into your environment with a new baby. So we've done a lot with less help than I think we would have had if it weren't the time of a pandemic. And it's just been incredible. I think, you know, people say sometimes that, you know, you kind of fall in love with your spouse all over again, when you have a baby. And that's definitely true for us. And I just, I feel like I've really just come to appreciate the true depths of his kindness through this last year because he's been incredible. And I don't, I don't know how we would have made it if it was just me and my girl.
Kristyn
I love that. And congratulations on your baby. Very exciting.
Marisa
Thank you!
Kristyn
I'm so glad to hear that you both have really made such a profound step in that partnership. I mean, talk about a time to become parents.
Marisa
Riiiight! (Laughter) Yeah, I tell I tell people, it's kind of you know, it's interesting, because, you know, it was our first time becoming parents. And so we don't really have any frame of reference for it being any different. And so I think if this had been our second baby, maybe we would have been more, you know, sad about some of the things that had to be different. But since this is the only way we've ever known it, you know, it may be kind of a blessing in that way.
Kristyn
Well, Marisa, that sentiment really resonates with me, because it's often how we feel about Luke because Luke is our first child. And so like you said, we had no baseline, if you will, we didn't know what it was to be parents of a healthy child. And so as we would, you know, approach things or get his doctor's schedules, or his medication schedules, or anything like that we didn't have anything to compare it to. So we didn't really know truly how different our lives were at the time. And everything. So yeah, so I, I hear you and I relate to that so much as well.