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

Podcast Show Notes

Katie and Cortney Given from Podcast Host from Mindset for Medical Mom’s 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.

 

 

 



You Might Also Like…

Comfort positions

Download the Comfort Positioning Guide

 

 

Being close to a trusted adult is powerful. It lessens pain and brings comfort when kids need it most. This guide shows you how to keep kids safe, and help them feel supported, during medical procedures. From the Meg Foundation for Pain and Child Life On Call.

Your download is heading to your inbox now!

Pin It on Pinterest

Share This