Rae's Rockstars
RAFAEL
At 31 weeks in utero, baby Rafael was diagnosed with Double outlet right ventricle (DORV), Transposition of the great arteries (TGA), and Ventricular septal defect (VSD). As you can imagine, getting a diagnosis like this flipped this family’s world upside-down. The next 9 weeks were filled with multiple weekly appointments and having only one vehicle, put additional stress on mom and dad. Baby Rafael was born on June 1st and was transferred to Phoenix Children’s Hospital where he underwent his first open heart surgery at 9 days old to allow more blood to flow to his lower body. He will likely need subsequent surgeries as he gets older. Rafael is recovering well and has been inpatient since birth with a 1-year-old big sister at home. Mom and dad are trying hard to manage hospital life and home life in the hopes of all being at home together soon. RaeRae is honored to support this young family as they navigate their CHD journey with baby Rafael.
TAVISH
When baby Tavish was in utero, he was diagnosed with aortic stenosis, or the narrowing of the aortic valve opening. At 4 days old, he had a balloon procedure which never really helped. Then, at 6 months old the balloon procedure was tried again but had the same result. On October 11, 2023, Tavish had the Ross Procedure; his aortic valve replaced with his pulmonary valve, and an artificial valve was put in place of the pulmonary valve. A day after surgery he was taken off the ventilator and was breathing on his own. A week later he was discharged! Tavish will need at least two more surgeries to replace the pulmonary valve as he grows. Tavish has an older brother who is two and he has a heart murmur and will also be monitored regularly by his cardiologist. With Tavish having CHD, it has opened this family’s eyes to a whole new world they are living with. He is their strong, brave, little heart warrior.
WYATT
Wyatt was born on May 17th with Pulmonary Atresia/ IVS and Right Ventricle Coronary Sinusoids. He had a PDA stent placed at six days old, followed by a prolonged recovery. It was determined that he needed a heart transplant, and he is currently on a Berlin Heart to bridge to the transplant. He has been inpatient since birth and has spent most of his young life intubated while awaiting a transplant. Mom and Dad switch places daily to stay with 4-month-old Wyatt’s bedside at all times. Mom has not returned to work, so she can spend her days at the hospital as Wyatt waits for a new heart, hoping to have one soon.
Update: Wyatt received his gift of life in January of 2024 and is currently thriving!
Griffin was born “healthy” on October 12, 2007, in southern California. Within hours he was transferred to the NICU as mother’s intuition indicated something was very wrong. There they did an echocardiogram and found that Griffin’s heart had not formed properly. He was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). He was quickly sent to Children’s Hospital of Los Angeles (CHLA) where at 3 days old, he had the first of his three life saving surgeries. The next two surgeries Griffin needed were the Glenn (at 4 months old) and the Fontan (at 2 ½ years old), but he continued to recover well. Over the years Griffin has needed several heart catheterizations and procedures to monitor his health and heart function. Today Griffin is 15 years old, and although he was born with HLHS, this heart warrior has lived a fairly healthy life. Then suddenly in late 2022, Griffin suffered a GI bleed from an unknown source. Tests were performed which showed some small varices or enlarged veins. The team checked again two months later to find the varices had grown in size, requiring the placement of two bands to attempt to minimize the risk of bleeding. About 2 weeks after the procedure, Griffin suffered a sudden, very large, and very scary episode of vomiting blood. He was rushed to the hospital where he was given 4 units of blood, and so started his journey to transplant. Griffin’s heart defect has caused Fontan Associated Liver Disease (FALD), and he now needs not only a new heart, but a new liver as well. This is very rare in pediatrics and has only been performed about 30 times in the United States.
UPDATE: Griffin received the gift of life in August 2023 and after a successful heart/liver transplant, he is currently recovering at home!
GRIFFIN
WAYLON LUCAS
Waylon was born in September 2022 in Bakersfield, CA. Shortly after his birth, doctors realized something wasn’t quite right. A few hours later, he was airlifted to UCLA Mattel Children’s Hospital. He was diagnosed with HLHS and had his first open heart surgery at two days old. Waylon struggled to get off the ventilator, and after a lung biopsy, he was diagnosed with pulmonary interstitial glycogenosis, only the 55th case worldwide. Eventually, he could go home in December 2022 for only a few short weeks. A few days before Christmas, Waylon was readmitted to UCLA. Since then, he has been diagnosed with pulmonary vein stenosis in all four veins, underwent a second open heart surgery, battled three strains of staph, a blood clot behind his heart, and has been one desat away from ECMO, but has miraculously pulled through. Waylon remains in the PICU with his mom, who lives with him full time.
Update: Waylon is home with his family and living his best life!
DEREK
Derek is a happy 6 1/2 year old who was born with a multitude of Congenital Heart Defects affecting his aorta which also cause compression of his esophagus and airway. The variants of CHD that Derek have account for less than 1% of all defects, and his particular diagnosis is even more considerably rare. Derek is currently awaiting his 3rd open heart surgery. Doctors will need to move his aorta while repairing damage to his airway. Due to the complexity of this surgery, Derek and his mother will need to travel out of state in order to receive the care he needs. Derek is a true warrior!
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ALY GRAE
Aly was born with a double outlet right ventricle, Tetralogy of Fallot, severe pulmonary stenosis, and tracheal stenosis. She was diagnosed prenatally at 22 weeks which allowed her parents to get as much information as they could to prepare for her care. After she was born, she spent the first 6 months of her life at Phoenix Children’s Hospital where she underwent 3 open heart surgeries, and one life-saving tracheal surgery. She went in to cardiac arrest twice and had to be placed on ECMO (life support). She was hospitalized again earlier in 2022 with covid and adenovirus. It was most recently discovered that Aly’s heart is getting worse and she will need her 4th heart surgery very soon and will likely spend her 1st birthday in-patient. Despite all of this, Aly is the happiest and sassiest little girl! Her mom and dad love everything about her, and she brings more joy to the family than they could ever imagine!
QUINN
Quinn is a sweet girl born with Hypoplastic Left Heart Syndrome or HLHS. Without intervention, this is a fatal diagnosis and requires a series of 3 open-heart surgeries. Quinn’s first surgery was at seven days old, the second at four months old, and her most recent surgery was in 2020. Like most heart babies, she was fed via a feeding tube but could wean off at 2. Developmental and eating delays required therapy five days a week until she could catch up. Quinn’s journey has been an uphill battle over the past four years, leaving her with Medical PTSD. Her most recent Sensory Processing Disorder (SPD) diagnosis requires weekly therapy. Thankfully, Quinn’s heart function is well proper now. She is thriving and is the happiest girl despite the struggles she faces. She inspires many people because she can always find the good in everything and lights up a room with her beautiful smile!
Fly High
Little Angels
In Loving Memory of these courageous children
who bravely fought their battles with CHD. They will never be forgotten.
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