Grandson has Hypoplastic Left Heart

My grandson Wesley has Hypoplastic Left Heart Syndrome.  He was diagnosed in August when my daughter Rachel was 20 weeks pregnant.  Using a high resolution ultrasound, the pediatric heart doctor said the left side of Wesley's heart had stopped developing. Wesley is scheduled to be born by C-section on November 2, 2018. He has a 0% chance of surviving without surgery. He will need three open heart surgeries to survive.  He will have open heart surgery as soon as he is born  (Norwood Procedure). He will have open heart surgery again when he is 3-6 months old (Glenn Procedure). He will need to have open heart surgery again sometime between the age of 18 mos and 4 years old (Fontan Procedure). 

If all goes well, he will be in the hospital 6-10 weeks after each surgery with the first couple of weeks being in intensive care.  This means in all likelihood, Wesley will be spending his first Christmas in the hospital. I just hope that it is in an area of the hospital where his big sister can visit and the Family can be together.

They will lose one income because Wesley's immune system  will be too weak  to be exposed to the contagious  bugs typically found in daycare settings.  Exposure to a virus that might result a runny nose in an otherwise healthy child could have catastrophic health consequences for Wesley. 

I was in the room when my daughter Rachel and son-in-law Jake got the diagnosis and an overview of the treatment which included the three heart surgeries above.  I watched my daughter and her husband try to mentally process the diagnosis, treatment and prognosis.  Their faces shape shifting from confusion, to denial,  to horror, to anger, to worry and being scared.  As a dad and grandpa, I have never felt more helpless in my life. My baby girl was hurting in ways I have never experienced as a parent and in ways that are incomprehensible to me as a man.

Creating this Go Fund Me page is the first thing I thought of that I consider to be tangible help for my baby girl and her family. We are trying to raise $5,000 to help with out of pocket medical expenses and  household expenses during the first 6-8 months of Wesley's life. If you have taken the time to read this, I thank you for your time. If you have the resources and can make a donation, I want to thank you in advance for you kindness and compassion.

For those with continued interest, I will use this page to update you on Wesley's progress as the situation dictates. Thank you again. 

See the links below for more information on HLHS

CDC Facts about Hypoplastic Left Heart Syndrome - https://www.cdc.gov/ncbddd/heartdefects/hlhs.html

 Mayo Clinic – Hypopastic left heart syndrome - https://www.mayoclinic.org/diseases-conditions/hypoplastic-left-heart-syndrome/symptoms-causes/syc-20350599

 See the link below for info on the Congenital Heart Center at OSF Children's Hospital in Peoria, IL 

Congenital Heart Center at OSF Children's Hospital- https://www.osfhealthcare.org/childrens/services/heart/
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Organizer and beneficiary

Doug Sams 
Organizer
East Peoria, IL
Rachel Calkins 
Beneficiary
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