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!
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.
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.
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.
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.