Atypical Truth

Genetics, reproduction, fertility, and the role of IVF with preimplantation genetic testing (PGT) as a reproductive option with Kristyn Newbern and genetics counselor Marisa Andrews.

Genetics counselor Marisa Andrews joins Kristyn to discuss IVF with PGT, which is just one of many family planning options couples have if there's a known risk of passing down a severe or life-threatening genetic disease.  Marisa helps to explain the process you might experience on this journey. First, she touches on genetic testing and the different types of genetic results. Then she explains the process of pre-implantation genetic testing or PGT and in vitro fertilization, also called IVF.

Helpful Links:

National Society of Genetic Counselors

Preimplantation Genetic Testing (PGT)

In vitro Fertilization (IVF)

Genetic Testing 101

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton

Kristyn Newbern and Nichole Rosenberger are two moms of children with rare diseases finding comfort in the permission to get uncomfortable.

This is the story of a very rare friendship. A friendship that has traveled familiar scary paths faced many of the same medical challenges, had the same hard conversations, trusted the same surgeons with the lives of their children, waited in the same family room, stared at the same hospital walls, listened to the same alarms of beeping machines and blaring monitors - all this while wondering how to move forward with all that they both came to know. This is the story of Kristyn and Nichole.

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton

Two versions of the same story, a story about surgery day. Told from the perspectives of a mother, Kristyn Newber, and a child, Erica Stearns (an adult who had many surgeries throughout her childhood).

Unlike the conversations that usually take place on this show, today, you will hear two versions of the same story. A story about surgery day. Kristyn and Erica narrate their time spent preparing for, undergoing, and recovering from high-risk operations through the perspectives of both a mother and a child.

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton

Life within and beyond the hospital walls with Pediatric Cardiologist Dr. Chetana Reddy at Cardinal Glennon Children's Hospital.

Dr. Reddy takes us through a day in her heels as she travels throughout Cardinal Glennon Children's Hospital helping her Pediatric Cardiology patients. In this episode, we get to learn more about the many layers of communication that take place before the doctor ever appears in your room. We also get to learn more about the importance of hearing a patient's story as opposed to reading it in a medical chart - two very different approaches to learning about the medical history, both equal in importance. Dr. Reddy shares with us the unexpected joys she has found in her role in helping older pediatric patients and her hopes for the future of medicine. 

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton

A bit of self-disclosure and a reminder for the busybodies in the world.

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton

Reflecting on last week's episode with Katie Palmer, in this Afterthoughts Episode, Kristyn and Erica spent an evening discussing the power of connecting through hearing a person's story, the lack of disability representation in our society, and how certain privileges influence all these themes - even in the rare disease community. 

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton

Katie is an international family and child advocate for those impacted by Noonan Syndrome. Katie touches on her experience of growing up with a rare disease and how that has inspired her to help families navigate a rare diagnosis. Katie answers questions from members of the Noonan Syndrome Facebook group and we chat a bit about the responsibility that comes with sharing our story in hopes of helping others.

One day, Katie decided to do a hashtag search for her rare condition. Expecting to find only a few posts about her disease, Katie was surprised to find an entire community of caregivers sharing their experiences.

In hopes of providing parents with a new outlook on their child’s condition, Katie began to share her adult perspective of growing up with Noonan Syndrome. Fast forward two years later, and she is helping families from all over the world. 

Katie is now an international family and child advocate for those impacted by Noonan Syndrome. Katie touches on her experience of growing up with a rare disease and how that has inspired her to help families navigate a rare diagnosis. Katie answers questions from members of the Noonan Syndrome Facebook group, and we chat a bit about the responsibility that comes with sharing our story in hopes of helping others.

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton

Once a medical mom, always a medical mom. Kristyn Newbern shares her experience raising two brothers with different abilities and personalities.

Growing a family does not look the same for everyone. Kristyn shares about the difficult decisions, obstacles, and challenges they faced in their pursuit to grow into a family of four. Kristyn details the stark and perhaps even painful acknowledgment of the differences between newborn Luke and newborn Ozzie. We discuss how eye-opening it is as parents to see our children developing with two distinctly different personalities. Kristyn opens up about learning to trust that Ozzie is healthy, and she shares the differences in her worries for them both. Finally, Kristyn leaves us with some compelling advice for any parent facing a complex medical journey.

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton

Kristyn Newbern shares the rarely talked about responsibilities of raising a child with a rare diagnosis and disabilities: trust in strangers, vulnerability with others, learning to let go of control, and helping them to write their own stories.

In this episode, we hear about who Luke is today and how Kristyn is navigating parenthood in a world that isn't always as inclusive as it should be. Kristyn shares her concerns that come with parenting a child whose medical condition isn't obvious, along with both the internal and external challenges that come with deciding on how to voice those concerns. We discuss the fears that come with relinquishing the care of our children in the trust and new professionals who enter their lives. And I share a bit about how we as parents are modeling for our children how to interact with society, which then influences how they choose to introduce themselves to their peers and the rest of the world. And just like in previous episodes, we have the pleasure of hearing from Luke as well.

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton