Every year, 100,000 babies don't make it to their first birthday because of CHD.
Daxtyn Kai Gabbart | Heart Warrior of the Week

Very special Heart Angel, Daxtyn Kai Gabbart, is our Heart Warrior of the Week! Daxtyn was born on December 21st, 2017 with complete atrioventricular canal defect and coarctation of the aorta (CoA). His first surgery was performed on January 11th, 2018 to correct the CoA and to have a band placed around his pulmonary artery to allow the left side of his heart to catch up with the size of the right side. His second surgery was supposed to be around July 2018, which would correct the complete AV canal, but that day wouldn’t come for Daxtyn – after a courageous battle against CHD, he went to be with the angels on March 23rd, 2018.

Between his birth, going through open-heart surgery like a Rockstar, learning to eat, and moving to the step down unit before coming home, Daxtyn spent 55 of his 93 days in the hospital. Although his life was short, his Mom and Dad have found so much love and meaning in it, they say the following:

We always considered ourselves lucky to have Daxtyn. We knew he faced difficult roads and surgeries ahead, but we knew he would thrive. He showed us just how strong he really was through his first surgery. Daxtyn was not your typical baby with Down Syndrome - as biased as I am being his mother, there truly is some amazing science behind my statement! When we met with the genetics counselor, they explained to us that there are different categories of Down Syndrome. He found that Daxtyn didn’t fall into any of these categories. When he explained that Daxtyn had only half an extra copy of a chromosome that fell somewhere between his 21st and 23rd chromosomes, we knew we had a special child on our hands. This blew many minds, including ours, the doctors, nurses, and even geneticists, as  this had never been seen or heard of before.

Daxtyn had the absolute best personality and he made it very clear to his mommy and daddy that he feared nothing, and overcame every obstacle that was against him. We are heartbroken that our little heart warrior is no longer with us, we will never be the same without him, but we quickly realized just how many people Daxtyn truly impacted in his short time with us. My husband and I were contacted by numerous people from all over the world through social media. They told us how much our story helped them when they received their own Down Syndrome or CHD diagnosis, how blessed we were to have such a precious child, which we never took for granted, and how inspiring Daxtyn was and continues to be. A lot of people see Down Syndrome as a devastating diagnosis, but we took it and ran with it, embracing everything that came with it. We educated ourselves to the fullest, which in return helped us more than we would realize. Daxtyn started a legacy that still lives on with us, he is still so very loved and frequently talked about. He did more in 3 months than I have done in 25 years. He taught me so much more than anyone could realize, and he did all of this without saying one word. Daxtyn is truly the best thing that has ever happened to our family and we will continue to live our lives for him!

Daxtyn’s Heart Conditions

Coarctation of the Aorta

Anatomy: Narrowing of the aorta, the large blood vessel that branches off your heart and delivers oxygen-rich blood to your body.

Complications: Coarctation of the aorta can lead to narrowing of the aortic valve, high blood pressure, stroke, aortic aneurysm, rupture or tear, premature coronary artery disease, or brain aneurysm. If the case is severe, patients can enter heart failure or their heart might not be able to pump enough blood to the other organs. This can cause damage to the heart and can also result in kidney failure or other organ failure.

Symptoms: Most patients don’t have symptoms, but those that do have pale skin , heavy sweating, difficulty breathing, difficulty feeding, high blood pressure, headache, muscle weakness, leg cramps or cold feet, nosebleeds, and chest pain.

Treatment: Treatment options include open-heart surgery and balloon catheterizations depending on the severity of the condition.

Prevalence: This CHD accounts for 4-6% of all congenital heart defects, occurring in approximately 4 out of every 10,000 live births worldwide. It affects males more than females at a rate of 59 to 41.

Complete Atrioventricular Canal Defect (CAVC)

Anatomy: A large hole in the center of the heart affecting all four chambers (left atrium, right atrium, left ventricle, right ventricle) that would normally be divided. The valves that separate the upper and lower chambers (tricuspid and mitral) also develops abnormally.

Complications: Oxygen-rich blood and oxygen-poor blood mixes, and too much blood circulates back to the lungs before it travels through the body. This means the heart works harder than it should have to, and will become enlarged and damaged if the problems aren't repaired. A CAVC also leaves the body with low oxygen saturations.

Symptoms: Blue or purple tint to lips, skin and nails (cyanosis), difficulty breathing, poor weight gain or growth, and heart murmurs.

Treatment: Complete atrioventricular canal defects require surgery, usually within the first two or three months of life. The surgeon will close the large hole with one or two patches. The surgeon will also separate the single large valve into two valves and will reconstruct the valves so they are as close to normal as possible, depending on the child's heart anatomy.

Prevalence: AV canal defects account for about 4-5% of all congenital heart defects, occurring in 0.3-0.4 per 1000 live births worldwide.

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