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Heart Warrior Stories

October

Branson is a Maryland local, and very special Heart Warrior.

In 2013 during his 20-week anatomy scan, Branson’s parents learned that he had Hypoplastic Left Heart Syndrome. After more tests and scans, it was discovered that he has Heterotaxy Syndrome, which occurs when some, or all, organs of the body are not located in the correct positions. In Branson’s case, all of his organs are a mirror image of what is “normal”, like his heart. This means his heart resides on the right side of his body instead of the left, and his “right heart” is on the left side of his body. Branson’s diagnosis was changed to Hypoplastic Right Heart Syndrome (HRHS), where the right side of the heart is critically underdeveloped and is unable to provide enough blood flow to the body.

Branson also has Transposition of the Great Arteries, where the vessels that carry blood to the lungs and body are switched, so oxygenated blood pumps to the lungs instead of the body.

Weeks before his delivery, Branson’s parents made the long trip from Maryland to Boston Children’s Hospital to develop a plan. There, they waited three week for his arrival. At 6 days old, Branson had his first open heart surgery (OHS), the Norwood procedure, the first of three OHS to treat HRHS. He showed how amazing he is and recovered with flying colors.

At six months old, Branson had his second OHS, the Glenn procedure. Just three days post-op, while in the step-down recovery unit, he placed his hand on his chin, his version of sign language for “happy”. He was discharged just five days after his OHS. Exactly two years later, Branson underwent his third OHS, the Fontan procedure. As he always does, he was positive, strong, and showed that he can handle anything. He was discharged six days after OHS.

He recovered beautifully and continues to thrive with a single ventricle (lower chamber of the heart) with no physical restrictions or limitations. Today, Branson reads at a high school level, is the best big brother to his little sister, is empathetic, and full of compassion. He is the definition of a true Heart Warrior!

September

Anthony was born in 2016 and lives with his family in Montana.  He absolutely loves animals, is obsessed with trains, and is so friendly and happy.  Anthony was diagnosed with Tetralogy of Fallot (TOF) along with Trisomy 18 (Edwards Syndrome).  TOF consists of a group of four congenital heart defects: narrowed pulmonary artery, an opening in the wall between the two lower chambers of the heart (ventricular septal defect or VSD), which overrides the aorta so the aorta is shifted toward the right side of the heart, and enlargement of the right ventricle.

Edwards Syndrome is a chromosome disorder where there are three copies of the chromosome 18 instead of the usual two copies. Symptoms include CHDs, and various abnormalities of other organs.  Anthony was born with both heart failure and kidney failure, which made treatment for either of them delicate to balance.  His team of doctors had to get creative with his treatment plan because the usual medicines for TOF couldn’t be prescribed due to his kidney failure.

Anthony was a true fighter.  He not only came out of kidney failure, but he tolerated his heart extremely well!  At 16 months-old Anthony’s heart could not keep up anymore and he went back into heart failure.  He had his first and only open-heart surgery where they corrected his VSD, removed a large number of muscle bundles that had grown in his right ventricle, and reconstructed his tricuspid valve.  Anthony also had a kidney transplant which makes him the second child with Edwards Syndrome to be approved for a transplant of any kind.  Anthony’s little body has so much to deal with, but he’s a fighter and proves doctors wrong all the time! 

August

Collier was born in 2017 and was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) in the 20-week anatomy scan before birth. In HLHS, the left side of the heart is critically underdeveloped. Like so many Heart Families, Collier’s parents decided to travel from their home in Mississippi to Children’s Hospital in Dallas, Texas, where they left behind their 3-year-old son.

Just 5 days after birth, Collier had his first open heart surgery (OHS), the Norwood procedure, which is the first of 3 major OHS for HLHS. Shortly after his surgery, Collier’s incision became infected, and he had to receive 3 treatments over 7 days and continue IV antibiotics for 6 weeks. During that time, Collier could not come off oxygen because he had outgrown the shunt that was placed in the first procedure. He ate and grew like a champ, so his medical team decided to perform the second OHS, the Glenn procedure, just 5 days shy of 3 months old. Due to a complication, a chest tube had to be inserted. A day later, Collier decided he was done with the chest tube and pulled it out himself! Thankfully, the tube drained most of the fluid, so it didn’t need to be reinserted.

Collier was also quite picky about his food. He was switched to non-fat formula for 6 weeks, however hated the taste so much he refused to eat, so Collier had a feeding tube placed. As soon as the 6 weeks was over, the feeding tube was removed and Collier once again ate like a champ! Collier was discharged after a total of 110 days inpatient and made the trip back to Mississippi to meet his big brother.

Once he was discharged, he never looked back. Today, Collier attends a Prescribed Pediatric Extended Care, which is a daycare for medically complex children. Collier’s parents are so thankful for how far he has come.  They continue to share their Heart Warrior’s story to give other Heart Parents hope for their Warriors.

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PO Box 725, New Windsor, MD 21776 | info@thekht.org

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