Born 24 July 2008, to Tara and Chris Gibson, and big sister Mallory!

The following blog post is going to give you Collin’s medical story… a lot of medical facts that I will try to explain as simply as possible so that you can understand his journey.

From before he was born, he was diagnosed with a congenital heart defect, Hypoplastic Left Heart Syndrome.  Having received a prenatal diagnosis allowed for the Gibsons to plan and prepare for their son’s heart condition.  It also allowed every doctor that Collin would ever see to provide him with the care he needed.  Early diagnosis results in vastly better care!

Collin’s surgeries were a three stage process:  The Norwood Procedure, The Bidirectional Glenn, and The Fontan Procedure.

September 2008 – age 2 months – Collin underwent the Norwood Procedure.  It addresses severe defects where the left side of the heart is underdeveloped, preventing it from effectively pumping blood. Collin was in the hospital for a couple of weeks after his Norwood Procedure.  Between September and December he had weekly appointments to monitor his heart function and progress.

December 2008 – age 5 months – Collin underwent his first cardiac catheterization. This is common and crucial for assessing and managing blood flow balance (systemic/pulmonary/coronary) before the next surgical stage.

February 2009 – age 7 months – Collin underwent the Bidirectional Glenn Procedure.  This is a palliative heart surgery for infants with single-ventricle defects (like HLHS), connecting the superior vena cava directly to the pulmonary artery to send blood to the lungs passively, reducing the single ventricle’s workload.  The redirection allows upper body blood to oxygenate without the heart pumping it, improving circulation.  Collin was in the hospital for about a week after his Glenn Procedure.
Following the Glenn, Collin was irritable and cranky, and likely suffered from what are known as ‘Glenn headaches’
The goal between the Glenn Procedure and his next, the Fontan Procedure, was to gain weight and build strength.  In the meantime he underwent physical therapy and speech therapy to help him progress.

In April of 2010 he started walking, and Chris and Tara continued to work on getting him to gain weight and get stronger… as well as deal with all the other things that come with having a toddler, and a 5 year old sister!

April 2012 – age 3 years 9 months – Collin underwent the Fontan Procedure.   It is a complex, palliative heart surgery for children with single-ventricle defects, redirecting deoxygenated blood from the body directly to the lungs to bypass the heart, allowing the single working ventricle to pump only oxygenated blood to the body, improving oxygen levels and reducing heart strain.  Collin was in the hospital for 2 weeks after his Fontan Procedure.  

Following the Fontan there were weekly doctor’s visits with labs and x-rays.  He was diagnosed with Pleural Effusion, which is the buildup of excess fluid in the pleural space, the area between the lungs and chest wall.  He was in the hospital for about 2 weeks, and was placed on a low fat diet… Super fun for a 4 year old, eh?!
He had what is called a chyle leak where lymphatic fluid (chyle) leaks from damaged lymphatic vessels, often after surgery, causing fluid buildup.  This meant he had to be on a special diet for 12 weeks.

From July through December of 2012 Collin attended pre-k.  Tara and Chris found a place that would cater to Collin’s needs and allow him some much needed socialization.

In December of 2012, Tara started noticing the signs of PLE (Protein-Losing Enteropathy is a condition where excessive protein leaks from the gastrointestinal tract into the gut, causing low blood protein, diarrhea, and swelling (edema)).  Collin had a decreased appetite, he was irritable, had trouble sleeping, and a distended belly.  From December 2012 through March 2013 Tara and Chris fought for answers.  Tara’s mama heart just knew that it was PLE, but Collin’s doctor disagreed and would not order testing for it.  So, Tara found a new doctor for Collin, one who would order the testing, and would eventually prove Tara’s suspicions to be true!  *Never doubt a mama who knows!*
The goal now… protein!

In November 2015 – age 7 years 4 months – the PLE journey began.  Collin was put on a plethora of medications to help with the PLE.  By 2017 he was in remission.  That lasted until 2020.

In 2020 – age 12 – Collin got Covid.  This kicked off his PLE again.  
From 2020-2022 – ages 12-14 – Collin was fighting the PLE, taking a variety of meds, and having regular doctors visits to monitor his condition.  He had gotten to a point where he was maxed out on his meds, and had become a candidate for PLE intervention.  

Tara and Chris got referral to CHOP (Children’s Hospital of Philadelphia), who are the leaders in treating PLE.  Collin and his folks traveled to Pennsylvania where he would undergo a Lymphatic Embolization Procedure.  Lymphatic embolization is a minimally invasive treatment for PLE, especially in patients with congenital heart disease, targeting abnormal leaks of albumin-rich lymph from liver lymphatics into the gut.  The goal is to increase albumin levels and improve symptoms, with promising short-to-medium-term results.  Collin got about 6 months of relief from this procedure.

In December 2023 – age 15 – the PLE was back.  In January 2024 a Thoracic Duct Decompression (TDD) was performed.  TDD is a procedure that reroutes lymphatic drainage from the congested thoracic duct into a lower-pressure vein or atrium, primarily to treat severe lymphatic complications like PLE.
Collin would need cardiac catheterization and an MRI to monitor his condition.

In January 2025 – age 16 – his heart pressures started to elevate.  He was put on more meds and monitored closely and regularly.

September 2025 – age 17 – another cardiac catheterization to check for pressures.  This is when it is discovered that his Fontan procedure was failing, and that the Fontan circulation was causing major damage to his liver, as well.  A CTA (Computed Tomography Angiography, a non-invasive imaging test using X-rays and contrast dye to create detailed 2D/3D images of blood vessels) was performed and it was found that his liver was fibrotic (too stiff).
The decision was made that he was a candidate for a dual transplant… heart and liver.

2 January 2026 – age 16 – Collin is admitted to Arthur M. Blank (formerly CHOA) in preparation for being put on the transplant list, and to start him on the meds that would keep him healthy for transplant.
9 January 2026 – the family gets the information that a heart and liver have become available for Collin.
11 January 2026 – Collin undergoes dual transplant surgery.

Today, 14 January 2026 – Collin is post op.  Today he is working on sitting up in a chair, he is slowly starting to talk (and be bossy as ever, I’m sure!), and is coming out from days of being highly medicated.  He is showing signs of his spunky personality, and his teenage ways!

So… there it is, Collin’s heart history up to today.  
Please remember to keep Collin, Tara, Chris, and Mallory in your prayers.  
Please take a moment to consider what you can GIVE to COTA for Collin’s Heart Journey to assist with his transplant-related expenses in this highest time of need.
Please take a moment to SHARE Collin’s COTA link, and his story.  

*As the honorary auntie… I would like to thank, on behalf of The Gibson’s, everyone who has donated, prayed, thought about, and reached out.  Your love, time, attention, and donation have not gone unnoticed!  Tara and Chris are forever grateful for the community that surrounds and loves Collin*
**also, please take a moment in your prayers and remember the donor family.  Honor their loss, their sacrifice, and their generous gift of life for Collin**

GIVE if you can to COTA in honor of Collin’s Heart Journey.
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