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Heart Warrior Stories

January

Tessa is a local Maryland Heart Warrior and part of our University of Maryland Medical System (UMMS) Children’s Heart Program family!

Tessa’s “one of a kind” heart was noticed in the 20-week anatomy scan before she was born. Tessa’s mom was referred to UMMS CHP. When Tessa entered this world in February 2018, she was diagnosed with SIX different congenital heart defects.

Tessa had her first open heart surgery (OHS) at nine days old, and second OHS at ten days old before she was placed on ECMO (life support) for a week. Tessa spent 80 days in the Pediatric Intensive Care Unit (PICU) and three weeks at Mount Washington to work on feeding before she received a gastronomy tube (G-tube) so she could finally go home.

At four months old Tessa was scheduled for a cardiac catheterization to determine her treatment plan’s next steps. The procedure went well, however hours later Tessa’s heart stopped. She was then intubated and put on paralytics to keep her still. Throughout the next week, after Tessa had multiple heart attacks, it was determined she would need a heart transplant. For her to make it to the transplant, Tessa was kept completely paralyzed for three weeks and put on the Berlin Heart (type of “artificial heart” pump). Tessa was a high-risk transplant candidate due to her specific anatomy.

After eight months, Tessa received a new heart.  There were some critical setbacks during the surgery and the days after, but she fought like a true warrior. She spent three months in recovery and finally came home after 11 months in the PICU. Tessa is currently the youngest heart transplant recipient at UMMS! Tessa will continue to have yearly procedures to check for rejection.

Tessa is a sweet girl who loves Frozen and Spider-Man. She has a long road ahead and her future is unknown, but she hasn’t let anything stop her yet. Tessa is the definition of a Heart Warrior!


2022

December

Jameson is a Maryland local Heart Warrior and part of our University of Maryland Children’s Heart Program family!

Jameson’s mom had a normal pregnancy and in May 2019, Jameson made his way into the world. At only a few hours old, a loud heart murmur was detected (a “whooshing” sound when there should be none). Jameson’s mom was reassured that they would do many follow-ups to make sure it decreased over the next day. The next morning, during an echocardiogram to see the heart in action, his oxygen levels dropped. Jameson was placed in an isolette with tubes and oxygen, and was transferred to the Neonatal Intensive Care Unit (NICU).

Jameson was diagnosed with Tetralogy of Fallot (TOF), a condition made up of four Congenital Heart Defects (CHD): Pulmonary Stenosis, a narrowed pulmonary valve that makes it difficult for blood to go from the heart to the lungs; Ventricular Septal Defect (VSD), a hole between the 2 lower chambers; Overriding Aorta, the vessel that carries blood to the body comes from both lower chambers instead of from one, so the body gets too much oxygen-poor blood; and Enlarged Right Ventricle (lower chamber) which makes it harder for the blood to go to the lungs.

Jameson was transferred to University of Maryland Children's Hospital. At one week old he had his first open heart surgery to help his lungs receive more blood and his heart to pump more effectively. He recovered like a Warrior, and just six weeks later he had his second open heart surgery.

After 104 days of surgeries, feeding therapies, physical therapy, and occupational therapy, Jameson was released to go home, but his journey didn’t stop there. Jameson had a home health nurse that came to monitor him. He is now a Spider-Man loving boy who is full of energy! Jameson’s Heart Journey is far from over: he will need another open heart surgery to replace one of his valves as he grows.

Fight the fight, Warrior!

November

Camden is a nine-year-old Heart Warrior. He was born a healthy baby but when he was five days old, his parents noticed he had difficulty breathing and his heart seemed to race. His mom made the call to get him checked out. What they didn’t know is that decision was going to save his life.

They took him to a pediatrician who, after immediate evaluation, had Camden airlifted to Children’s Hospital in Milwaukee, where he was admitted into the NICU. After several tests, they found he had an abnormality with his aorta and was diagnosed with Coarctation of the Aorta (COA), a constriction in a part of the aorta. Camden was also diagnosed with BAV, ASD, MVS and Shones Syndrome.

At six days old, he underwent an extensive open-heart surgery and stayed in the hospital for another few weeks on a ventilator, arterial line, IV and catheter.

Like a true Heart Warrior, Camden was discharged 18 days post-surgery. Both his parents and his cardiology team are so proud of Camden and call him their “little champion”. His parents thank God every day for him and truly appreciate people like you who support CHD!


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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