From diagnosis to triumph: How our miracle baby survived hypoplastic left heart syndrome
- Category: Cardiology
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Shelby and Devin Crawford had been trying to conceive for five years, facing numerous disappointments along the way. “We wanted to have a baby so badly, but it just wouldn’t happen,” Shelby recalls. Then, in January 2024, their dream came true.
Shelby recall’s the day she found out she was finally pregnant,
“When I checked to see if I was pregnant, I saw a positive line gradually emerge. I took the test during work and shared the news with my coworkers,” she says, her excitement palpable.
Eager to share the news with Devin, Shelby took five more pregnancy tests just to be sure. When Devin got home, she lined up all the positive tests in the bathroom. “I was kind of waiting for him to walk into the bathroom, and when he went in there, he was like, ‘Is this for real?’ We were so excited and thrilled,” Shelby recounts.
Shelby’s pregnancy started smoothly. She had no morning sickness or complications, and everything seemed to be progressing well. Regular checkups with her OB-GYN at West Jefferson Medical Center showed their son, Cyrus, was developing as expected. However, at the 20-week anatomy scan, the ultrasound technician couldn’t get a clear view of the baby’s heart. A second scan at 22-weeks yielded the same result, leading her OB-GYN to refer Shelby to a high-risk maternal-fetal medicine (MFM) physician. .jpg)
At 27-weeks, after several ultrasounds, her MFM at West Jefferson Medical Center suspected Cyrus had Hypoplastic Left Heart Syndrome (HLHS), a rare condition where the left side of the heart is underdeveloped. Shelby was referred to Shannon Powell, DO, a pediatric cardiologist at Manning Family Children's, for further confirmation and to discuss the path forward. A few days after Shelby met with her MFM, Dr. Powell confirmed HLHS, and explained that Cyrus would need a series of surgeries to manage the condition.
“I was so emotional because I didn’t expect to hear this type of news and how serious this condition would be for our baby,” Shelby shares. “We remained hopeful and took everything one day at a time. I tried my best not to stress and cry because I knew that wasn’t good for the baby. Dr. Powell reassured us that her team had extensive experience with HLHS and that treatment had significantly advanced. She explained that the surgeries offered promising outcomes for children with this heart condition.”
The couple leaned on their close-knit family and HLHS support groups, finding solace in prayer and the shared experiences of others. They prepared for the uncertainty ahead with hope and determination. [1].jpg)
On September 8, 2024, at 37 weeks, Shelby went in for a routine checkup and learned that Cyrus’ amniotic fluid was low and his heart rate was dropping due to the umbilical cord wrapped around his neck. An emergency C-section was performed, and Cyrus was born at West Jefferson Hospital, weighing 6 pounds, 9 ounces. Although Shelby was sedated during the procedure, she was relieved to hear that her baby was screaming as she had been told that HLHS babies are often quiet when they are born.
“Once I got back into recovery, I saw my baby for the first time,” Shelby remembers. However, their time together was brief as Cyrus was airlifted to Manning Family Children’s for immediate care.
Once in the neonatal intensive care unit (NICU), Cyrus was given prostaglandins to keep his patent ductus arteriosus (PDA) open due to his heart condition. The PDA is a blood vessel that allows blood to bypass the underdeveloped left side of the heart and flow to the rest of the body. Keeping the PDA open is important for babies with HLHS to ensure adequate blood circulation.
At four days old, Cyrus underwent the Norwood procedure, the first of three surgeries required for HLHS. During the Norwood procedure, surgeons reconstructed Cyrus's heart to create a new aorta and connect it to the right ventricle, allowing it to pump blood to the body. This surgery reroutes the blood flow and improves oxygenation.
“I was nervous but Children’s has a helpful phone app that allows a member of the OR team to send you timely updates throughout the surgery,” said Shelby. “I received updates every hour, which was very reassuring.” The surgery lasted six to seven hours and was a success with no complications.
Cyrus spent about a month in the cardiac intensive care unit (CICU). After his discharge on October 5, 2024, the Home Monitoring Team played a key role in his ongoing care. Led by Dr. Powell and supported by Lynn Bardales (RN) and Stephanie Bush (NP), the team ensured that Cyrus was closely monitored at home, offering continuous support and being available around the clock to address any concerns. Their dedication and expertise provided Cyrus's family with both the medical guidance and emotional reassurance needed during this critical time. [1].jpg)
At five months old, Cyrus underwent his second heart surgery, the Glenn procedure. In this procedure, the superior vena cava (the large vein that carries deoxygenated blood from the upper body) was connected to the pulmonary arteries. This reroutes blood directly to the lungs for oxygenation, bypassing the right side of the heart, reducing the workload on the right ventricle.
Initially, Cyrus recovered well, but a month later, he went into heart failure due to myocarditis, an inflammation of the heart muscle.
“At his regular follow-up, his cardiologist reviewed the echocardiograms and noticed something was wrong,” said Shelby. “The heart's contraction wasn’t as it should be. We started worrying once again.”
Fortunately, Cyrus’s condition stabilized with timely medical intervention and immunoglobulin infusion.
Today, Cyrus is a thriving 9-month-old. He is gaining weight, mastering crawling, and showing signs of wanting to walk. His follow-up checkups with Dr. Powell have been positive. The family is now on a three-month checkup schedule due to Cyrus’s amazing progress since his two open-heart surgeries.
When Cyrus is between 3 and 5 years old, he will need the Fontan procedure, the final surgery for HLHS. This surgery will reroute blood flow to bypass the heart, allowing the right ventricle to pump oxygenated blood more efficiently. Despite this upcoming surgery, Shelby and Devin are optimistic about the future.
“We are grateful to the nurses and doctors at Children’s,” said the Crawfords. “They took great care of our baby and exceeded our expectations. Everyone was kind, compassionate, and dedicated to our baby’s care, ensuring the best possible outcomes. HIs doctors have been incredibly supportive throughout this journey.”
The Crawfords’ message to other families on a similar journey is one of faith and patience. “Have faith and take it day by day. You don’t know what the future holds, but you can’t stress about what might happen. Be patient, because it’s a long road, but it is very rewarding. It was rewarding for us to see our child reaching milestones I never expected. Focus on what you can control and cherish every moment.”
For more information about the Heart Center at Manning Family Children’s, visit:
