Six months after Rachel and Levi Strauss married on the coldest Valentine’s Day in Detroit history, they learned they were having a baby.
At their home in Houston, Levi helped satisfy Rachel’s cravings for milkshakes, chips and queso, and stuffed mega cookies.
During Rachel’s 20-week anatomical scan, the couple held hands and smiled as the technician pointed out their son’s 10 tiny fingers and toes. The baby had a healthy brain and kidneys.
Then the technician saw his heart. She was silent. She left the room to fetch Rachel’s doctor.
Rachel and Levi’s hands started to sweat.
The doctor told them that something was wrong with their son’s heart. A fetal echocardiogram was needed to determine the problem. But it was a Friday. The couple had to wait all weekend to get tested.
Early the following week, a technician performed the three-hour test. A few days later, Rachel and Levi, who both work in insurance, were in their respective offices a few steps away from each other when Rachel’s doctor called.
She told the couple that the baby had a heart defect. Levi’s hands started shaking and they both started crying. She suggested they be transferred to a nearby children’s hospital where there were specialists who could help, and get another fetal echocardiogram.
This weekend, Levi had planned a birthday party for Rachel at their house. He lined up a grilled cheese food truck for the guests. Rachel wanted to cancel.
“The more positive we are, the more positive the outcome will be,” Levi told him.
Because it was close to Valentine’s Day, Levi planned a heart decor. They clung to that. They also have a brave face. Not ready to share their news, the couple did their best to enjoy the event with friends and family.
The following week, they had the second echo. Their new doctor took them to what Levi calls “the crying room.” The doctor told them that their son had a congenital heart defect called tetralogy of Fallot. His abnormal heart structure caused oxygen-poor blood to leave his heart and circulate around his body. He also suffered from pulmonary atresia. This is when the valve responsible for controlling blood flow from the heart to the lungs does not form.
He would probably have been born blue, the doctor said, and would need open-heart surgery soon after birth. Rachel and Levi were holding each other and crying. They bought a big comfy couch and stayed home for a week watching TV shows.
“I started bawling in the back of Best Buy,” Rachel said. “Then,” Levi added, “we did our research.”
In the days that followed, they learned more about the disease and found a cardiologist and a surgeon with whom they felt comfortable. “I remember thinking, if Rachel and I can get through this, we can get through anything,” Levi said.
The couple knew that due to the baby’s heart condition, Rachel would have to be induced. They filled the delivery room with friends and family members and made personalized t-shirts for everyone with a picture of a heart on them. The nurses also wore the shirts.
Nearly two dozen doctors and nurses filled the delivery room. Rachel’s best friend sent live updates to friends and family who aren’t in the room.
Leo Elijah Strauss was born pink, not blue, and he was named after Levi’s grandfather, who is a Holocaust survivor. Leo’s name in Hebrew, Lev, means heart. Rachel and Levi held Leo before he was taken to the neonatal intensive care unit where he spent the next 23 days.
They gave him a blanket they had slept with before birth and a stuffed lion they named Frasier after Leo’s surgeon.
On the 23rd day of his life, Leo underwent surgery that lasted almost nine hours. He widened the passage between his right ventricle and his pulmonary artery to improve blood flow to his lungs. After the operation, he was connected with wires and cords. He had to eat through a feeding tube. Ten days later, Rachel and Levi took him home.
Now Leo is 5 years old and loves playing with Legos. He wants to be a policeman and a dad when he grows up. He loves playing with his little sister, 4-year-old Goldie, whose Hebrew name, Neshemah, means soul. (When they became pregnant again, Rachel and Levi feared their daughter might also have a heart problem, but doctors said the odds were slim.)
Leo sees his cardiologist once a year and may need another surgery to repair or replace the valves in his heart.
“Leo is the most amazing individual,” Levi said. “I’m so honored to know him. He’s kind, gentle, smart, loving, caring and brilliant.”
Rachel wishes she knew how common heart defects were in babies when she was pregnant. They affect approximately 1 in 100 births in the United States each year. “But at the time, we felt like 1 in 3 trillion,” she said.
Now she and Levi are dedicated to educating and supporting other parents. Every few months someone who knows her story asks if they can talk to a friend or family member whose baby has a heart defect. They gladly accept.
Levi volunteered at the hospital where Leo had surgery, teaching a class for parents of newly diagnosed children. “Our goal is to be there for other parents,” he said. “Find help, avoid Google, and know that a heart defect won’t stop your child from being the person they will be.”
Stories from the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
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