On today's episode of the podcast we will hear from Kirsten Black, a Certified Child Life Specialist, who had the opportunity to visit children's hospitals in Sweden. Kirsten shares her perspective on the major differences in pediatric healthcare, what she learned...
Episode 131 | Paola’s Story – A son with ADA-SCID
Podcast Show Notes
Paola shares the shocking diagnosis her son received as a newborn of ADA-SCID (Severe Combined Immunodeficiency.) This powerful story a he shares how she navigated hospital life during the beginning of the pandemic and her journey with postpartum depression. She shares words of wisdom on how to deal with the feelings that come when your child gets a life altering diagnosis.
[5:22] Paola describes the grief she experienced with Jakob’s diagnosis
[7:10] She describes the shock and acceptance of the news that Jakob has ADA-SCID
[9:12] Postpartum depression struggles during isolation
[11:10] Sharing the importance of opening up about your struggles
[13:44] Being a first time Mom and medical mom
[15:03] Paola describes how she fights the good fight
[17:44] Her cervical cancer diagnosis after Jakob’s diagnosis
[19:29] Paola’s campaign to fight for Jakob’s treatment
[20:21]She describes how her cancer diagnosis was her moment to pause
[26:50] Coming up with a plan and leaning on community helped Paola cope with the diagnosis
[30:12] She shares how Child Life specialists have helped reduced the trauma Jakob has had to endure
[31:28] Jakob has taught Paola to be brave and to have courage
[32:20] Paola has created an environment that helps Jakob have some normal day to day activities despite being isolation
[33:45] She shares how her motherhood journey was so different than what she anticipated, she feels fierce and does not take no for an answer
Connect with Paola:
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- Create and use a coping plan for any medical appointment or procedure
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