Submitted by: Kerry Petrauskas, mother to Brady Lukas
Our sweet boy, Brady Lukas, was born on February 26, 2016. As far as we knew he was a healthy 7 pound 8 ounce, 20 inch long, little pumpkin, who passed his “going home” tests with flying colors.
I want to preface by saying that hindsight is always 20/20. So my description of the events leading to Brady’s hospitalization and surgery include what to some may seem not red-flag symptoms. However, when put all together, after the fact, all signs point ultimately to his congenital heart defect.
Red flag #1- When Brady was born we immediately noticed that his feet were very blue. I asked every nurse and doctor, to which they all had the same answer: Some babies take longer than others to get full blood flow to their lower extremities. We accepted this answer being that Brady passed all of his discharge tests with flying colors.
So, on February 27, we brought our little bundle home. I was having success with breastfeeding and all was going according to my hopes.
Around a week in, we noticed a few changes in our “little bear”. First, he was sleeping constantly. Newborns sleep on average 18-21 hours a day. Brady was sleeping 23+ hours and was next to impossible to wake up for feedings. He also slept soundly through diaper changes.
Slowly over the course of the next few days we noticed a decrease in his appetite. Where he started out drinking 2 ounces every two hours, he was then drinking only 1/2 an ounces every 3-4 hours. He was just too exhausted to eat. On day 11 I had to stop breastfeeding due to breast complications. So, that evening my husband and I decided we would begin giving Brady the same formula his older brothers had been on. The night of March 9th I woke Brady on three occasions to attempt to feed him, with very little success.
Early morning on March 10th, our lives turned upside down. We awoke to find Brady’s skin yellow, jaundiced-looking. His skin was cold and clammy to the touch. His temperature was only 96. His lips and all around his mouth was blue. I immediately called the pediatricians office and scheduled an appointment. Surely, I thought, it was something simple, like a reaction to the formula we started him on just the day before. We’d see the doctor, get a new formula suited for our babies system and go home well and happy, right…?
Wrong. The minute the nurse saw Brady’s skin she didn’t bother doing any of the routine checks as done at every other appointment, (temperature, weight, blood pressure, etc). She walked right out of the room and called the doctor in stat. Upon examination and listening to Brady’s heart beat the doctor knew our sweet 12-day-old baby was experiencing heart failure. The tell tale sign was the “galloping” she was hearing in his chest. My reaction was, Heart failure!! WHAT?!?!?! Wasn’t he just having a reaction to the formula we chose???
From that point on much of the events are a blur. The next thing I knew I was strapped down to an ambulance gurney holding my baby who was hooked up to oxygen and struggling to breathe and we were rushed to the hospital. It was there that the initial tests were run. His x-ray results showed a very enlarged heart. Where a healthy baby would have had even blood pressures in all extremities, Brady’s all differed greatly from each other. This prompted the doctors to transfer him to another hospital with more specialized care.
As soon as we arrived there, Brady was greeted by his future “BFF,” his cardiologist, crib side. She immediately performed an echocardiogram to determine the cause of heart failure. Within just a few short moments she discovered that Brady had a congenital heart defect known as an Aortic Coarctation. In simple terms, he had a kink in his aorta, which was preventing proper blood flow, especially to his lower half, (remember his blue feet at birth?) The only way to fix the defect would be to call upon the surgical team to go into Brady’s chest, cut out the portion of aorta that was kinked, then reattach the two ends. Simple enough, right? Not quite. Our sweet little bear was so sick. He was going to need several days on a slew of medications to get him stronger and prepare his body for surgery.
The next three days were the longest of my life. I sat watching my 7 lb angel be poked, prodded, and hooked up to so many machines and medication dispensers. I cried constantly, to the point I had no tears left. My husband and I were, and are, so lucky to have both of our parents and siblings close by. Their love and support kept us strong and positive. As word spread through friends and family of Brady’s condition, prayers spread clear across the country for him. Masses were being said in his name, prayer candles lit, and positive vibes sent from all angles. God was most certainly with us!
On March 13th, Brady went into surgery. Everything went well. The surgeon showed us pictures of the obstruction on Brady’s aorta. It is amazing that he was getting any blood flow at all. My husband and I were praised by every hospital staff member for our quick reaction and for getting him to the doctor when we did. Had we waited even an hour more Brady’s organs may have begun to shut down.
Once we were back home and I had time to process everything we’d been through I decided I wanted desperately to help other families who would go through what we just experienced. If nothing else, to offer support, to share our story, to give hope, and prayers, and love to other mommies and daddy’s whose lives would be flipped upside down.
Today, Brady is doing amazing! He sees his cardiologist once per year and remains stable. He is super active and participates in both baseball and martial arts! Brady loves the Washington Nationals and Capitals and is a big DC sports fan. And his favorite color is red, so that’s a bonus! Ever since he could talk (and to this day) he has always said he wants to be a heart surgeon when he grows up. He wants “to save little babies like Dr. Collazo saved me!” He made this picture a while back and it stays on our fridge!
Faith, Hope, and Love; these three things are what got me through this. Also, when you support the American Heart Association, you are helping to heal hearts and save lives. You are helping precious kids like Brady and families like mine. You power scientific breakthroughs, and education. So please support the American Heart Association, be a part of their events, volunteer your time and be generous because families like mine need you. Brady has a bright future ahead and it is thanks to so many including you.
To learn more about Brady’s congenital heart defect, visit: https://www.heart.org/en/health-topics/congenital-heart-defects/about-congenital-heart-defects/coarctation-of-the-aorta-coa.
Please consider supporting the American Heart Association. Learn how you can get involed and about our local activities at heart.org/greaterwashington.