Kayne’s journey is the perfect example of how having the right people at the right time in your path can change your life.

In September 2021, Kayne was born with a complex and rare congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS).  In HLHS, the left side of the heart is critically underdeveloped.  His parents found out about his diagnosis before birth at his 20-week anatomy scan.  Like many Heart Families, before his due date, Kayne’s mom left her older son and husband to move three hours away near a hospital that was more advanced, but not a “high-risk” hospital.

When Kayne was born, the doctors realized that the hole between the right atrium and right ventricle was smaller than they thought, which made him more high-risk; he did not get enough blood to his lungs, and a quick but important decision had to be made.  His team performed a cardiac catheterization, which created a new hole, and placed a stent to widen it.

Kayne improved and his mom was able to finally hold him.  Hours later, a nurse noticed that something was wrong – he now received too much blood to his lungs, as the stent was too large.  His first open heart surgery (OHS) took place that night and bands were placed to reduce the blood flow to the lungs.

Two weeks later, he had his second OHS, the Norwood procedure, which is the first of three OHS for HLHS.  Kayne recovered quickly, exceeded expectations every day, and was able to go home two weeks earlier than expected.  The nurse that day who noticed something was off has become their angel in disguise.

Kayne approaches his third OHS, the Glenn procedure, and although nervous, his family is positive and feels blessed every day that they have Kayne to snuggle.  They can’t wait to watch him grow and continue to enjoy him every day!

February is American Heart Month, but CHD Awareness Week from February 7-14 is when our little Heart Warriors can shine! To share information about the disease, each day during CHD Awareness Week KHT gave the spotlight to a brave Heart Warrior.

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

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!

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!

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!