Leo's Story: Diagnosis and Treatment of congenital heart defect, Tetralogy of Fallot

Patient Stories

A little background … My wife Rachel and I fell in love and dated long distance (Houston to Detroit) for just over a year before we got engaged. My love was so strong for her, the only thing that made sense was if my proposal took place in the center of a heart made by picture frames and pictures of our adventures together.

It was only fitting a couple like us get married on a day that celebrated love. So we got married on the day of hearts, Valentine’s Day. Mind you it was the coldest Valentine’s Day in Detroit history at negative 8 degrees, but we managed to warm everyone with our love.

When we found out we were pregnant, it was the best day of our lives. We were beyond elated and could not wait to share our love with our son.

Every ultrasound and checkup was perfect. That is, until we got to our 20 week anatomy scan. “I see all 10 fingers and all 10 toes,” said the technician running the scan. She continued with “His brain, kidneys, both look great!”… And then came the silence. “Something does not look right with the heart. Let me bring a doctor in.” The sweat of our hands holding each other’s nearly separated them. The doctor came in and reviewed the ultrasound. She told us not to worry and it could just be bad read in the inflow/outflow of blood and oxygen in the heart. Don’t worry?! It was a Friday and we couldn’t get a pediatric cardiologist to conduct an echo cardiogram, a test I didn’t even want to know existed for babies in utero, until the following week.

The next exam was a three hour process … with no doctor in the room, just a technician who said nothing. Nothing at all about our unborn son for three hours. It took four days for us to hear back from our OB/GYN. My wife’s office and my office are just steps apart, so I could hear when she answered the phone and ran into her office. “Your baby has a heart defect and I am recommending you transfer your care to Texas Children’s Hospital.” She began to describe things like “truncus arteriosus.” Between the shaking of my hands and the tears rolling off our cheeks, I could barely write anything down for reference.

We transferred to Texas Children's® Pavilion for Women and scheduled yet another fetal echo cardiogram. This time, mine and my wife’s family were present while a pediatric cardiologist conducted the exam. At the conclusion of the exam, we were brought into a lounge, which I call “the crying room.”  The doctor said, “Your baby has a congenital heart defect called Tetralogy of Fallot with pulmonary atresia. It will require open-heart surgery about three to five days after the birth of your child.” The way I explain this may sound vain and shallow but that Facebookable moment of a picture of mom, dad and baby with post saying, “welcome to the world (insert baby name) … Our hearts are filled with joy and mom is doing great” evaporated and disintegrated. Needless to say, it wasn’t the humidity in Houston that caused all the moisture and precipitation in the room that day. We were all out of our minds for the loss of the idea of a normal and routine birth.

The silver-lining: Texas Children’s Hospital was, at the time, number two in the nation (now number 1) in pediatric cardiology, which means they try harder. We now had time to digest everything we had heard and research. Immediately, Shaun White’s story was brought to our attention; an Olympic gold medalist in snowboarding with tetralogy of Fallot. Surely this could not be a life-debilitating diagnosis if this was the case.

As the days, weeks and months rolled on, we had time to let it all marinate. We selected our all-star team and lined them up. From cardiologist, to anesthesiologist, to the man who would be literally touching our son’s heart, Dr. Charles Fraser.

Due to the heart defect, we were told we would need to have an induced birth. This allowed us to properly schedule all teams if needed immediately. So we scheduled to come in on May 19 to begin the induction. Our room was filled with family and friends. And I don’t just mean before the birth. My wife opted to have her mother, step father, father, step mother, my mother, my father and my best friend’s wife (as social media chair-live text updates to all friends and family-because that’s normal, right?) to be present during the birthing process.

Leo Elijah Strauss was born on Friday, May 20, 2016, in a room filled with love. Despite what we were told prior to his birth, we were able to hold him before he went to the neonatal intensive care unit (NICU).

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In the NICU is where we spent most of our days. Chillin’ out maxin’, relaxin’ all cool … for 23 days. And, on his 23rd day of life, we got the go ahead to have Leo’s open-heart surgery in which they would repair his defect. We had shirts made to show our support for our son during his eight-and-a-half hour, open-heart surgery. We sold them to our friends and family, asked they wear them on surgery day and send pictures to show they had a “heart on for Leo” with all proceeds going to Texas Children’s. The surgery was long. It was long and scary. We were updated about every two to three hours and in the end, we were told it was a successful procedure and they were able to make all the repairs needed to avoid any future surgeries for quite some time.

Seeing him post-op was a sight. To imagine at such a young age, he could go through this was beyond comprehension. But what was more amazing, was how quickly he bounced back from the procedure.

Ten days after his open-heart surgery and full repair, we were able to take Leo home. He is a completely normal baby that slightly resembles a cabbage patch kid. He is the beat of our hearts and makes us prouder every day. He wears his scars with pride and will be celebrated at the next Bad Pants Open golf tournament, which raises critical funds to support research and advanced education for NICU providers at Texas Children's Newborn Center®.

While my wife and I were scared to death with this diagnosis, we remind ourselves we wouldn’t have changed any part of this story. In participating in the hospital’s patient education courses, we were able to meet other parents who had already gone through this prior to Leo’s birth. We were so moved we begged to speak to the next class after Leo’s birth and share his story to comfort those with the same diagnosis. The friends we have made in this journey, we like to say, “We are all connected at the heart.”

Learn more about Tetralogy of Fallot

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