Child Life On Call

In this episode, you’ll hear Tricia talk about the fight of a lifetime to find a diagnosis for her daughter, Cora, who is now 13 years old. After four and a half years of countless doctors and very little sleep, Tricia learned that her daughter has Rolandic Epilepsy.

Karen had a typical pregnancy up until the last few scary days when she was unable to feel her daughter move. After following her mother instinct, she went to the hospital and quickly learned she would need an emergent c-section. As emergencies go, everything was unexpected. In this episode, she walks us through what her daughter's birth and subsequent NICU stay was like. Karen talks about the unknown's of her daughter's health as well as how difficult it was to be away from her in those first 48 hours.

After arriving at her 20 week ultrasound, Abigail, her husband and mother were anxiously awaiting to hear the news of their first child’s gender. However, the appointment took a turn when they learned that their son would be born with Spina Bifida. Abigail talks to us about that experience and their journey since that life changing moment. They’d come to learn that their son also had hearing loss and she talks about the challenges associated with it.   Abigail expresses her feelings about Teak’s diagnosis, talks about the incredible six (AND A HALF) year-old boy that he has become, and gives great advice to parents facing similar challenges. You can follow along and connect with Abigail through her blog, www.theheadhouseatx.com.   She recommends connecting with a Spina Bifida group on Facebook, she specifically has benefited from meeting other parents here. She also spent a lot of time on BabyCenter’s Spina Bifida group when Teak was born.  Abigail also recommends the following resources: www.hearingloss.org https://www.livebinders.com/play/play?id=1666786 (This is the Texas Regional Day School for the Deaf and Hard of Hearing programs that Abigail referenced in her interview)  If you would like to connect with Abigail, you can find her on Instagram or Facebook. She also blogs here and at Austin Moms Blog. 

In this episode you will hear Kim talk about her experience in finding out that her son had Microtia Atresia, the interesting link to their family history and how that has affected her journey, and the tough decision about how and when to move forward with surgery. Microtia is a congenital deformity where the external ear is underdeveloped, and Atresia is the absence or closure of the external auditory ear canal. The malformation of the middle ear bones may be affected including the narrowing of the ear canal. This is a birth deformity that occurs in about 5,000 to 7,000 births. Kim recommends the following resources: * Microtia.net * Earcommunity.org * Microtiasurgery.com * Pedient.com If you’d like to connect with Kim, you can do so through her blog, The Hill Country Woman, through social media sites Facebook and Instagram, and she also blogs for Austin Moms Blog. A big thank you to the incredible photographer, Laura Morsman Photography for her beautiful pictures of Kim and her family for this episode. If you live in Austin… book Laura Morsman Photgraphy NOW. Take a look at the world’s first swaddle for hospitalized infants, Woombie Med Pods, from Barski Vail Designs.    

Michelle’s story is one that took place over 15 years ago, and this is the first time she has spoken about it publicly. At the age of two, Brynn started developing inexplicable fevers which concerned her mother, an Emergency Room nurse. After trusting her gut that “something was wrong,” Michelle brought her daughter in the middle of the night to the ER and shortly after was diagnosed with meningoencephalitis and in a coma for over a week. Michelle brings a unique perspective on relationships with healthcare providers, given the fact that she is and has been a nurse for over 18 years. You’ll hear her talk about the benefits of building a trusting relationship with your child’s pediatrician. She gives great advice about how to find that specific provider, and also talks about the importance of following your parental instincts. If you would like to connect with Michelle, you can do so here, Michelle on Facebook or through her email, mlbrahaney@gmail.com. Please subscribe to the Child Life On Call Podcast and leave a review on iTunes. If you would like to share your story or have questions about this podcast, you can email info@childlifepodcast.com or submit your information via the website childlifepodcast.com.

After a long pregnancy on hospitalized bedrest, Kelli describes the birth and first year of her twin girls, one of which was born with two genetic conditions, Caudal Regression Syndrome and Goldenhar Syndrome. The journey to diagnose these conditions was a long one, and Kelli talks about what that process was like, and what is like to have a child with these two syndromes. Kelli recommends a several resources, www.isacra.com and the Goldenhar Syndrome Facebook group. Kelli also recommends rarediseases.org’s network for a community of support and information on Goldenhar syndrome. If you would like to connect with Kelli personally, you can follow her on instagram at @kelita83, on her blog at www.babygruens.wordpress.com and at Austin Moms Blog. If you would like to share your story or have questions about this podcast, you can email childlifeoncall@gmail.com or submit your information on childlifepodcast.com.  

This is the first and introductory podcast for Child Life On Call. First episode to launch in June 2017.