July 7, 2023 Archie and Henry came barreling into the world at exactly 32 weeks old. On top of being preemies, they were both born with a congenital heart disease, Tetralogy of Fallot, and a chromosomal disorder called XYY Syndrome better known as Jacob’s Syndrome or Super Male Syndrome. Both of our boys had different paths and stories, and we are honored to introduce you to them.
Say hello to Archie! Archie was born on July 7th, 2023 at 10:14pm via emergency c-section. He weighed 3 pounds 5 ounces and was 16 and 3/4 inches long.
Archie’s congenital heart defect is called Tetralogy of Fallot (TOF), which includes an anteriorly malaligned ventricular septal defect (VSD/hole in heart), overriding aorta, pulmonary stenosis, and right ventricular hypertrophy. At birth, he was considered a pink baby. Which means he had too much blood going into his lungs, so his heart was working extra hard; however, he still was getting plenty of oxygen to all his organs constantly unlike his baby brother, Henry. After 47 days in the NICU, Archie was discharged to grow at home until his heart surgery.
After he was discharged, the pediatrician found a large inguinal hernia that only surgery could fix. He had surgery in October to repair that. All is well there now.
Fast forward to November, right after Thanksgiving, Archie had his open heart surgery. He rocked his surgery and recovery but still isn’t considered fully repaired yet because there is still a small hole that can either close on its own or would need a cardiac catheterization procedure to fully repair it. As of now, the jury is still out on which would happen.
Archie is the toughest, strongest and happiest boy. Through everything he has gone through, his smile and joy have never left.
Archie is killing it with physical therapy and hitting milestones faster than anyone anticipated, and overall is thriving. We are hopeful that he will have a long happy life in his future.
Now, please meet our angel, Henry. He was born on July 7th, 2023 at 10:15pm via emergency c-section weighing in at 2 pounds 15.5 ounces and was 15 and 1/3 inches long.
Similar to Archie, Henry had a congenital heart defect called Tetralogy of Fallot (TOF) with an anteriorly malaligned ventricular septal defect (VSD/hole in heart), right ventricular hypertrophy, overriding aorta, and pulmonary atresia with major aortopulmonary collateral arteries (MAPCAs), which is the most severe variant of TOF. He was considered a blue baby, which means he would turn blue from lack of oxygenated blood flow to his body and organs regularly throughout each day.
I’m addition to his TOF, he also had severely hypoplastic confluent branch arteries to the lungs. This means the branch pulmonary arteries that pump blood from heart into the lungs are about 1/5th the size they should have been. Unfortunately, since birth, they never grew.
Besides his heart issues, he also ended up having a intraparenchymal hemorrhage (most severe case of brain bleed). This means blood was found in the ventricles, and there was infarction (tissue death) of the nearby white matter of the brain.
Due to all of these factors, and after having the top surgeons consulted on his case, Henry was deemed virtually inoperable 56 days after being born. Not the news any parent wants to hear. We wanted to reject the words of the doctors and hoped for a miracle. Eventually, he went into hospice care to transition home. After 84 days in the NICU, Henry got to come home on September 29th, and he had the best day. We couldn’t believe how much he loved the car ride and snuggling up next to Archie and sleeping without all the cords of the hospital machines. Being home with the twins that night was one of the best nights of our lives, as we know it was for Henry.
On September 30th, 85 days after being born, around 7:30 in the morning, I, his mommy, held Henry in my arms as he was welcomed home to Heaven. Henry changed everything about me, and I’m so grateful that we can share his story, say his name, and let him live on.
Him living on is demonstrated by his love for music being passed on to his older brother, Archie. Besides snuggles with his brother and parents, the one thing we know Henry loved was music, especially Electric Dance Music (EDM). His brother Archie, could not care less about music for the all of Henry’s life. However, shortly after Henry’s passing, Archie started to enjoy listening to EDM and all genres of music. Although we can no longer hold Henry in our arms, we find solace in holding onto the love for music that he shared with us and Archie, keeping his passion alive in our hearts forever.
The twins have an older brother named Ezra, and he is so excited to be their big brother. It’s a true joy to watch him grow up with Archie and want to ask about Henry. We’re eternally grateful God chose us to be their parents.
-Jeanette and Elroy, Archie and Henry’s mom and dad
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