The Strong Willed Warrior Initiative

I’d be lying if I said having almost lost a son before he was even one-year-old didn’t impact my life. It did, and he’s the main reason this GoFundMe, and the Strong Willed Warrior Initiative, exists. 

My son Liam was born with a Congenital Heart Defect. He is currently one year old, has already had two open heart surgeries, and his life is currently uncertain past the age of 40-50 simply because babies didn’t typically survive his condition until the 1980s. That’s a big part of my “why”.

Liam’s Story

Back in the spring of 2018, we were so excited to be pregnant with our third child. At the 20 week anatomy ultrasound, we found out our new addition would be a boy. We also found out that something wasn’t quite right. Our sweet little boy was suspected to have a Complex Single Ventricular Heart Defect. 

We were devastated. We were confused. We didn’t know where to turn. We researched and read the limited amount of information that was available, and found that 50% of parents choose to abort in this situation because there are so many unknowns with congenital heart defects (CHD). None of the numbers made sense and nobody could tell us anything with confidence. Everything was “it depends”.

After an echocardiogram at 32 weeks gestation, he was diagnosed with Double Inlet Left Ventricle. We were told he would need three open-heart surgeries in the first 5 years of his life—one immediately after his birth, one at 4-6 months old, and the final one at 3-4 years old. Below is a brief summary of what he has endured since his birth: 

August 28, 2018
- Liam Anthony Holbrook is born, weighing 6lbs 11oz, and a fighter from the start.
 
August 31, 2018 - He is taken into surgery for an aortic arch repair. The next few days are filled with ups and down, but he stabilizes. 
 
September 6, 2018 - We’re able to take Liam home.
 
October 2018 - Liam’s weight plateaus. We are driven to using an NG tube to feed him. 
 
November 2018 - At a checkup, we discover Liam is in heart failure. He is rushed into emergency surgery to widen the space between his ventricles before his organs are starved of blood and begin to fail. Liam fights his way back to us, but it’s the closest we’ve gotten to losing him, and it rocks us to our core. 
 
January 2019 - Liam’s aorta is narrowing. He’s sent for a heart cath procedure. Recovery is a bumpy road, but he once again proves his strength.
 
May 2019 - Liam begins vomiting up blood. We discover abnormal blood vessels in his lung that cannot be repaired without aggressive surgery that is not normally performed on children. We’re sent to a GI specialist for further investigation of the source of the bleeding.
 
June 13, 2019 - We go in for a pre-op appointment for Liam’s second major procedure, only to discover he still has bleeding in his GI tract. Additionally, he has a cold, and his aortic arch is narrowing again. Surgery is postponed. 
 
June 17, 2019 - Another heart cath. This time, it doesn’t work. The arch couldn’t be expanded without doing a whole Aortic Arch Reconstruction, which cannot be combined with his other surgeries, as it involves cooling his body down and stopping his blood circulation. Additionally, they find blood in his stool sample, so we’re set up for an endoscopy. 
 
June 19, 2019 - The endoscopy reveals sores in Liam’s stomach and ulcers in his esophagus. The doctors suggest it may be from the aspirin he’s taking, but they can’t guarantee that. 
 
July 24, 2019 - We have what we think is the final pre-op appointment for the Glenn Procedure. The blood in his GI tract is gone. The rhinovirus is cleared. His vitals and blood work look good, as does his imaging. We are ready to undertake this massive procedure, which includes: Disattaching the Superior Vena Cava and reattaching it to the Pulmonary Artery; connecting the Aorta and the Pulmonary Artery together; and redirecting Liam’s Anomalous Veins (PAPVR) to another part of the heart.
 
July 30, 2019 - The bleeding in his intestinal tract is back and he is set up for an emergency upper endoscopy (a procedure that precludes any major surgery for the next 10-14 days). It goes well, and they find no active bleeding. They suggest doing a scan for Meckel’s Diverticulum (a bulge in the small intestine). On the way home from the hospital, Liam turns bright red and spikes a fever; we end up back at the emergency room. Ultimately, it is a reaction to the reversal agent he was given for the anesthesia. Due to all this, his Glenn Procedure is postponed...again. 
 
September 2019 - We’re finally cleared for surgery!  The doctor admits Liam is a tough case because of the geometry of his heart and all the complications he has, but we are lucky that he is a very gifted surgeon, and our boy does very well. 
 
December 2019 - We are told that Liam doesn’t need to be seen for six months! His sats are good, and his echo shows no changes in his heart. For now, we’re savoring every day, but always with the understanding that things can change. 
Congenital Heart Disease is the #1 birth defect in newborns. There is no cure. Liam’s surgeries will not cure him. They are only designed to redirect his circulation to allow his heart and organs to function. Later in his life, these procedures will likely need to be revisited, as natural failures of the repairs occur. 

Additionally, his other organs may be impacted by this series of life saving surgeries. Many young adults need liver monitoring or even transplants as a result of the pressures from this unique circulation. This disease is a lifelong condition. It kills so many people, and yet research into treatments and management is grossly underfunded. 

Our Mission

Our primary focus will be assisting CHD families who don't currently have access to support and resources. In addition to providing food, hospitality, and funding for families in need or families residing in regions where care is limited, we also want to address topics such as: 

-How to make difficult decisions about potential termination of pregnancy

The lack of clear information available for parents at the early stages of gestation is staggering. People are often given misleading facts and data with no context. We aim to provide parents with a more honest picture of CHD so they can make the decision that is best for their family. 


-What parents can expect during the first 5 years of their child’s life

Both financially and emotionally, adjusting to caring for your CHD warrior will be difficult. We want to reduce that stress by arming families with information and helping them establish realistic expectations about the journey they’re embarking on. 


-What the time spent in and out of the hospital will be like

Caring for your CHD warrior can be very draining for everyone involved. If the parents have demanding jobs, or if there are other children in the family, it’s even more so. It’s so important to be prepared for how to continue living as normal a life as possible while going through this. 

Beyond this on-the-ground work, our fundraising efforts will be directed towards supporting medical research on CHD patients that are 20+ years old. There is so little known at this point about the long term effects of these childhood surgeries on other organs, as well as what complications they may cause later in life. Research is desperately needed to ensure that the children being operated on today are prepared to properly care for themselves well into adulthood. 

Our Plan 

There is so much need throughout the CHD community, but we’ve narrowed down the start of our work to the following three initiatives:

1. Warrior Packs

This will be a toolkit for families of CHD warriors that will help them stay healthy, well fed, properly clothed etc, during the long days at the hospital. It will feature baby onesies designed for kids who need ECG's and who have tubes running through their clothing, plus comfy hospital clothes for Mom/Dad, and toys/coloring books for brothers and sisters. We’ll also include gift vouchers for healthy meal prep and meal delivery services, along with recipes and meal plans that work well in a hospital environment. Additionally, these kits will have vital tips and resources for CHD warrior families included in each pack. 

2. Grannie’s Toques

My 94 year-old grandma has a dizziness problem, but she has found that knitting small toques (aka beanies, for our non-Canadian friends) is great for helping with that. So we’ll be shipping hand-knit toques to hospitals across North America to be given to new CHD babies. Just a little token of grandmotherly love to help these babies stay warm and comfortable as they begin their long fight. 

3. Family Sponsorships

We will be creating a fund especially earmarked for supporting CHD warrior families directly, which you can make either a one-time or recurring donations to. Funds will be distributed in response to requests from hospitals on behalf of families for support outside of the hospital’s normal means. This could include anything the family needs—from food and clothing to lodging, childcare for other children while they’re in the hospital with their CHD baby, travel expenses to reach a reputable healthcare facility, etc. 

Why Crowdfunding?

The Holbrook family has invested $10,000 to launch this project, and Tony Holbrook will be donating 100% of the proceeds from his recent book, The Digital Intrapreneur, to the initiative as well. But funding is sorely lacking for CHD research and assistance, and the need far outweighs the resources currently available for families. We need your support to help us make an impact today and into the future! 

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Organizer

Tony Holbrook 
Organizer
Surrey, BC
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