Episode 167 | Leah’s Story - A son with Hypoplastic Left Heart Syndrome

Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

English - April 26, 2023 06:00 - 52 minutes - 71.5 MB - ★★★★★ - 78 ratings
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Previous Episode: Episode 166 | Lo’s Story - Milk Making, Breastfeeding and Lactation Support in the Hospital Setting

Next Episode: Episode 168 | Olivier’s Story - A Film Inspired by A son with Down Syndrome

Katie and Cortney Given, host of the Mindset for Medical Moms Podcast, interview Leah Ward about her son Jackson and his journey with Hypoplastic Left Heart Syndrome (HLHS.) Leah shares the ups and downs of being a heart mom. Jackson received the gift of life through a Heart Transplant after he went into heart failure and was placed on the Berlin Heart for several months. Leah and Cortney's conversation (Cortney is a heart Mom too!) with Katie will leave you feeling inspired to live in each moment. You will not want to miss this episode of the podcast.

[6:50] Introductions

[8:40] 20 week ultrasound and subsequent echocardiograms

[9:57] The unimaginable grief of losing her older son months ago

[11:29] First surgery at 4 days old

[12:05] After Fontan surgery, Jackson developed a lung condition

[12:50] Rhinovirus caused Jackson to go into heart failure

[13:32] Jackson was put on a Berlin heart

[14:00] 15 month hospital stay

[15:14] Explaining to Jackson about his heart transplant

[16:00] Jackson's will to fight

[17:45] A sequence to to build up to the question

[19:00] Accepting reality that all life will end

[20:27] Advances in the medical field with the best quality of life

[22:11] How Leah supported Mae

[24:35] Grappling with the concept of finality

[27:14] Staying in the present

[29:35] It's ok to grieve the dreams you had for your children

[31:28] Letting yourself feel the feelings

[35:15] Taking things day by day

[36:31] Someone has lived through my worst fear

[38:30] You have be stronger than the diagnosis

[40:15] Advocate for your child

[43:00] Not having an end date

[48:33] Simple moments with family

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