Bri
Bri is battling anomalous origin of right coronary artery.
On November 22, 2022, Bri had open-heart surgery for a congenital heart defect. We just found out about this at 21 years old. This heart defect is called an anomalous origin of the right coronary artery. The University of Minnesota performed this open-heart surgery, called an unroofing procedure.
Nine months post-op (August 2023), she got very sick with pneumonia that collapsed both lungs (pleural effusion), which then spread to her heart. This caused pericarditis (infection around the heart) and a pericardial effusion (fluid around her heart). In the last 12 months, she has dealt with 8 different kinds of steroids, 6 of them long term, 5 antibiotics, steroid shots, steroid tapers, 13 other medications to keep her heart and other organs healthy, at least 10+ ER visits, multiple hospital admissions, 3 cardiac MRIs, 7 heart/lung CT scans, hundreds of blood draws, 5 pericardial effusions, 3 collapsed lungs, and pericarditis the whole 12 months.
She now deals with heart failure, ventricular tachycardia, a congenital heart defect, constriction and thickening of the pericardium. This has now done permanent damage to her heart. After multiple hospitalizations and being very sick last year, Mayo Clinic advised she needed emergent open-heart surgery. This surge try was done September 18, 2024. Post surgery, she hemorrhaged from the femoral line, had a reaction to the wound vac and all adhesives, 2 of the 4 chest tubes fell out before they were supposed to, and then her incision ruptured open. It has been a very long road!
-Bri, January 2025-
Oliver
Oliver battled a large VSD and coarctation of the aorta.
He will forever be 15 months old.
Oliver was born on 12/30/22, weighing just 2 pounds 13 oz. Oliver was born with a handful of birth defects, including severe congenital diaphragmatic hernia, congenital heart defects (large VSD and coarctation of the aorta), and esophageal atresia tracheal fistula. He was truly our miracle baby. Ollie lived for 15 beautiful months. He had 7 major surgeries, including open-heart surgery on 8/1/23. Oliver’s open-heart surgery to close his VSD and repair his coarctation of aorta was life-changing for him. He was 7 months old at the time and was still intubated. He was unable to come off the ventilator due to several complications in addition to his unresolved heart defects since birth. Three weeks after his heart surgery, he was moved to cpap and was the happiest we’d ever seen him. Less than 2 months later he was discharged from the hospital. Finally, at 9 months old, we got to take him home. We had 5 beautiful months with our miracle at home. Oliver was admitted back to the hospital in February 2024 for more surgeries he needed for his esophageal atresia. After his surgeries, he unexpectedly underwent cardiac arrest and required 37 minutes of intensive CPR. This resulted in unrecoverable brain damage and that is when we really lost him. He was in a vegetative state with a very poor prognosis. We made the heartbreaking decision to let Oliver go. He passed away peacefully on 4/26/24. We are grateful for the 15 months with our miracle baby. He was the happiest, strongest, and most adorable baby. His spirit was just so special, and he inspired so many people all over the world. He is our greatest blessing, and we know he is now our guardian angel watching over us.
-Oliver's mom, February 2025-
Ryleigh
Ryleigh battled a complete unbalanced AVSD + a variation of HLHS.
She will forever be 3 weeks old.
Ryleigh's CHD journey started at our 20-week anatomy scan when we were told there was something wrong with our baby girl's heart. Stat referrals for MFM and peds cardiology were sent, where we then found out Ryleigh had a Complete Unbalanced AVSD with a variation of HLHS. Throughout pregnancy, Ryleigh's heart made many improvements with the left side of her heart, but we were then given the diagnosis of Intrauterine Growth Restriction. Ryleigh was born on February 19, 2024 weighing 6 pounds and 19 inches long. At birth with her heart, we were only dealing with the complete AVSD, as well as a PDA. During her first week of life, she developed pneumatosis, suggesting NEC due to the unique blood flow to her gut, but she conquered that storm with stride. On March 2nd, Ryleigh was showing signs that her heart was not tolerating her PDA being open, so surgery was planned for first thing March 5th. Surgery was a success, and she tolerated it well. She was having difficulties being extubated, and on March 9th Ryleigh was diagnosed with sepsis, most likely related to a perforated bowel. The following day after speaking with many doctors, cardiology came to the conclusion that there was nothing more that could be done for our baby girl, as her CHD heart just could not tolerate everything sepsis was throwing at her. Ryleigh Grace passed peacefully on March 11, 2024, with her daddy and mommy holding her close.
-Ryleigh's mom, February 2025-
Truett
Truett is battling Ebstein's Anomaly.
Truett was born on June 11, 2024, after a quick, relatively uneventful and easy labor. Once he was delivered, we immediately knew something was wrong, he wasn’t crying and was completely cyanotic. The NICU team was called and quickly came to the room. They heard a loud murmur in his heart. He was taken down to the NICU where they performed testing. Within 2 hours of his birth, we received the unexpected diagnosis of Ebstein’s Anomaly. What should’ve been one of the happiest days of our lives turned into one of the scariest.
We were told he needed to be airlifted from our local hospital to Children’s National in DC and there was a chance he’d need immediate surgery. Once he arrived at National the team wanted to give him some time to see if surgery could be avoided. Miraculously, he did not end up needing surgery immediately. He was discharged home from the CICU at one week old.
He was doing so well for the first few months of his life. He was the happiest baby, feeding well, gaining weight, meeting his milestones. Then at the end of September he got sick which sent him in to a month's long decline. He wasn’t gaining weight anymore, his oxygen levels were dropping, he had a persistent cough, he was increasingly fussy and just not himself. We reached out to the top 2 surgeons in the country for Ebstein’s. Both agreed his heart was declining and it was time for surgery.
On December 18, 2024, Truett had his open-heart surgery, the cone procedure, in Pittsburgh. We were told the average length of stay was about a week in the hospital and only 5% of patients end up on ECMO post-cone. Truett had other plans!
His valve repair was successful, but he went into JET in the operating room and despite many medications they were unable to get him out of it. He was placed on ECMO in the OR and remained on ECMO for 4 days. By the grace of God, he was able to come off of ECMO successfully and then weaned off the ventilator 3 days later. He spent 10 days in the CICU and then transitioned to the step-down unit.
After 3 weeks we returned home to Virginia and our family was back together again. It took a while for him to fully get back to himself but each day we saw more of our old boy emerge.
Today he is home and continues to be closely monitored. He is thriving and we could not be more grateful as we look toward his first birthday!
-Truett's mom March 2025-