Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support - Episode 167 | Leah’s Story - A son with Hypoplastic Left Heart Syndrome

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

04/26/23 • 52 min

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

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

Connect with Leah Connect with Cortney Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

[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

Connect with Leah Connect with Cortney Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Previous Episode

Episode 166 | Lo’s Story - Milk Making, Breastfeeding and Lactation Support in the Hospital Setting

1 Recommendations

On today's episode of the podcast, Katie interviews Lo Nigorish, certified IBCLC Lactation Consultant and Host of The Milk Making Minutes Podcast. Whether your journey consisted of breastfeeding or not she shares how lactation consultants can assist with feeding the NICU and beyond. Lo shares her heart and mission behind supporting families. Whether you are a parent of a baby in the NICU or a clinician, you will not want to miss this episode.

[4:21] Introductions

[6:05] Parents are experts

[7:04] Perceptions of what a lactation specialist is and does

[8:38] Listening is so important

[10:45] Helping families feel heard and supported

[13:00] Focusing on what you can do in those moments

[14:12] Bottle feeding support

[17:20] It's ok to say no

[18:50] The evolution of breast feeding

[20:47] Congenital Heart Defect Mama's breast feeding journey

[22:32] Support is key

[23:09] Reframing your mind and not comparing your journey during

[24:00] How Chelsea's Story inspired Lo to connect with Child Life Specialists

[25:00 ] Assessing needs as a clinician prior to seeing the parent

[26:00] Creating an inclusive community

[28:00] Judgement free support zone

Connect with Lo

Instagram

Quabbin Birth Services

The Milk MakIng Minutes Podcast

Link to Show

' Letting go of Breastfeeding Comparisons' episode with Chelsea Bea

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Next Episode

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

Today we have another Dad on the podcast. Katie interviews Oliver Bernier, father of Emilio and filmmaker, about his son's unexpected diagnosis of down syndrome. You will learn what inspired Oliver to create a film to educate and empower parents of children with Down syndrome how to navigate the school system and be the best advocate for their child. Oliver's passion to educate parents about the importance of inclusivity will shine through as he shares an inspiring message.

[3:45] Introductions

[5:10] Forever connection to New York

[6:22] Filming the moments

[7:12] Misconceptions about Down syndrome

[9:28] Giving Emilio the world

[10:22] Building the bridge to understanding living with disabilities

[12:17] An atmosphere of acceptance

[15:01] Putting a dent the world to raise awareness

[17:20] Sharing other families stories on the film, giving him hope

[19:28] Living in the moment

[21:34] Universal design for learning

[23:18] Empathy taught by practice

[24:53] All parents advocating to be in classes with differently abled child

[26:45] NICU is a mirror of an inclusive classroom

Connect with Oliver

Forget Me Not Documentary

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.