Twin born with half a heart gets lifesaving surgeries.
Twin born with half a heart gets lifesaving surgeries
When Blanca Lozano headed for her first ultrasound, she had high hopes the image would reveal twins. Lozano loves being a twin sister herself. She had one son, Jorge Adrián, during her first pregnancy, and thought maybe the second time would be the charm.
“My husband was like, ‘Please don’t get excited,’ ” Lozano said.
But when the ultrasound revealed exactly what she wanted, “I was super, super, super excited,” Lozano said.
Her second ultrasound, however, raised cause for concern: One of the babies had a smaller heart than the other.
“But the twins were so tiny, they needed time to pass to see if they could outgrow it,” Lozano said.
A few weeks later, doctors delivered more bad news.
“They dropped the bomb,” Lozano said. “One of the babies did not have the left half of his heart.”
Pediatric cardiologist Dr. Donna Goff explained that one of the twins, Santiago, has hypoplastic left heart syndrome, a birth defect that impedes blood flow since the left half of the heart does not form correctly.
Lozano was beyond scared. “Could he live like that?” she asked. “I couldn’t imagine it was possible to live with half a heart. That day was probably the worst day in my life.”
After receiving the news in the spring of 2019, Lozano and her husband, Jorge Gomez, went to the doctor every two weeks for check-ups.
Goff, with UTHealth and the heart program at Children’s Memorial Hermann’s Fetal Center, explained that with identical twins, it was unusual that only one would have a defect. For the course of Lozano’s pregnancy, both babies remained under watch. And everything else was normal for the duration.
Lozano went in for a cesarean section on Sept. 10, 2019, and her husband held her hand through the procedure.
But Lozano only saw her babies for a few minutes before they were whisked to the NICU.
Marcello, the twin with the unaffected heart, was able to return to her quickly. But Lozano had to wait until the next day to see Santiago. He was not allowed to nurse because doctors did not want him to strain his heart. He had to remain in the hospital until his surgery.
“I went home with only one baby,” Lozano recalled. “After that, I had to come back for his surgery. That was my second worst day.”
Still, Lozano felt fortunate that Santiago would be in the hands of Dr. Jorge Salazar, co-director of the Children’s Heart Center at Children’s Memorial Hermann Hospital and professor and chief of the Division of Pediatric Cardiovascular Surgery for UTHealth.
“For me, he’s an angel,” she said. “He called us and explained, ‘I’ll do whatever I need to do.’ ”
While hypoplastic left heart syndrome is not that common, almost one in 100 babies are born with a heart defect. “And we specialize in taking care of the most challenging cases,” Salazar explained.
Surgeries to repair hypoplastic left heart syndrome are actually one of Salazar’s specialties.
“It is a lethal heart defect if nothing is done,” he said. “But there is a solution, and this is what we do every single day.”
The key, according to Salazar, is maximizing the heart function existing when an infant is born. “I take what the baby has and rearrange it so it works well,” he said.
Normally, the heart’s left ventricle pumps red, oxygenated blood to the body, and the right ventricle pumps blood to the lungs. The left ventricle plays the most important role, Salazar explained. Since Santiago was born without one, the surgeons rearranged the right ventricle to pump blood to the body.
There are three open-heart surgeries required to correct hypoplastic left heart syndrome. The first is the Norwood procedure, which can be completed when a baby is 1 or 2 weeks old. This operation redirects the right ventricle to take over for the left.
Lozano and Gomez spent the day in the hospital waiting, while Santiago underwent the surgery. During the weeks spent waiting for her son to recover, Lozano was at first consumed with worry. Then, Santiago inspired her.
“You see your baby fighting so hard to recover — and that gives you strength,” she said. “That really strengthened my faith.”
Finally, Lozano was able to take Santiago home.
Her goal was to help him grow larger and stronger in time for his next surgery, scheduled for January 2020.
The second operation, called the Glenn procedure, is typically completed when infants are 4 to 6 months old. With the Glenn procedure, the superior vena cava vein is disconnected from the heart and reconnected to the pulmonary artery. This allows blood to flow directly to the lungs and relieves the right ventricle from doing its work.
“That was probably the third most scary day in my life,” Lozano said
Still, the surgery was quick, as was Santiago’s recovery.
Salazar explained that the Glenn procedure basically jump-starts the engine for babies. “They pick up speed or gain momentum and get stronger and stronger,” he said.
Since his last surgery, Santiago’s development have taken off. He had a full schedule with occupational, physical and speech therapy. For example, he spent so much time in treatments that his muscles in his cheeks were not able to respond to the bottle or food.
Santiago’s hands and feet also did not develop due to his lack of movement. With therapy, he was able to surmount these challenges.
“I lived in the hospital a lot the past year, and the nurses were amazing,” Lozano said. “They really care about the babies. The doctors, they’re fathers, too. They have become my family.”
Now, Santiago is 18 months old and walking. “He’s not as fast as Marcello,” Lozano said. “He’s still a little behind, but he’s amazing.”
Simply looking at him, you would never know about his tumultuous first year of life, she added.
“You can barely tell he had surgery,” Salazar said.
Santiago will return for his final surgery when he is 3 years old. The Fontan procedure is the final step to redirect blood flow.
“The first surgery is the big one, and the Glenn and Fontan are much lower risk,” Salazar said.
Lozano said each day with Santiago feels like a miracle. She wants to remind other parents of children born with heart defects to have hope.
“Every day is a new day, and it’s just one day at a time,” she said. “Every step these kids make is a victory. And each victory is a lesson to us.”
The diagnosis is a challenge for any family, said Goff.
“This is a hard journey,” she said. “It’s hard enough to have this problem alone, but then add to it that there’s a twin at home and a 2-year-old.”
Goff saw Santiago for a checkup on Feb. 26. “I was like, ‘Wow,’ ” she recalled. “He looked great.”
Walking with Lozano and Gomez, providing the care they needed, was rewarding.
“It’s a privilege really to go through these journeys with families and then to see the babies thriving and doing well,” Goff said.