Sky Mattan Gopin is a miracle baby. He went from needing a heart transplant to nearly normal heart function in just a few months without heart surgery. Everyone agrees that it’s amazing and rarely happens to a sick baby. bottom.
A carefully coordinated approach to care, combined with the love and devotion of her family, allowed Sky to survive. And, of course, his strong spirit.
“A big part of Skye’s survival was that he had doctors who knew what to do, but the biggest reason he survived was his own fighting spirit,” said Skye’s mother, Brittany, or Britt. “When I was pregnant and got the news about his heart defect and other health problems, I put my hand on my belly and asked him, ‘You know what? Do you want to be born?” A loud and clear “Yes!” echoed throughout my body. ”
After his birth, every time Sky raised his right arm above his head, Britt was reminded of his strong will and desire to live. It became a symbol for her and her husband Adam to fight together.
listening to painful news during pregnancy
When Britt was pregnant, she and Adam learned from a specialist near their home in Mill Valley, California that Skye had heart disease in addition to other health conditions. He was given a 1% survival rate.
“That’s when we decided to transfer care to the hospital. fetal cardiology program so Stanford Medicine Children’s Healthwhere we met Teresa Tacey, M.D., Director of the Fetal Cardiology Program. “She and her team gave me a more hopeful prognosis in her prenatal counseling,” says Britt.
The sky was diagnosed as rare congenital heart disease called Ebstein anomalyThe tricuspid valve, which regulates blood flow between the upper right and lower right ventricles of the heart, does not form properly during early pregnancy. It is a rare condition that cardiologists describe as unpredictable. Some babies with Ebstein’s anomaly become adults before symptoms appear. Some people experience heart failure in utero or shortly after birth. Even during the prenatal period and after birth, it is not always easy to determine which direction a child will go.
“Doctors caring for Ebstein babies can be heartbroken by how difficult the disease can be. Some are able to adapt over time and behave like babies with more normal physiology,” says Dr. Tacy.
Associated gene variants and novel gene discovery
In the womb, Skye received a fetus echocardiogram (cardiac ultrasound) showed Ebstein’s anomalies in him, but not all. He also underwent genetic testing before birth that revealed genetic mutations associated with heart failure in adults, the abnormally formed heart muscle that is sometimes seen thanks to Sky and several other children in the world. may provide insight into the reason for the Ebstein anomaly.
A gene called ” TNNC1is responsible for making one of the proteins that builds the heart. TNNC1 A variant meant he had multiple heart conditions.” brendan floydMD, PhD, Pediatric Cardiology Fellow, Medical Geneticist, and Member cardiac genomics care team.
Second heart disease found at birth: left ventricular decompression
A second heart condition was discovered after birth. Left ventricular non-compression (LVNC)a kind of Cardiomyopathymaking the left side of Skye’s myocardium spongy and weak, instead of smooth and strong.
“Sky was born prematurely at 35 weeks, not only was he born with two heart problems. Seth Hollander, M.D.a pediatric cardiologist and medical director of heart transplantation at the Betty Eileen Moore Children’s Heart Center at Stanford Medicine Children’s Health.
For Skye, the condition on both sides of his heart meant that his heart wasn’t pumping properly and wasn’t pumping enough blood to his lungs, body and brain. It was done. Luckily he was at Stanford Children’s Hospital. Cardiologists have treated countless Ebstein’s anomalies and other complex heart defects and are experts in the care of premature babies with difficult heart conditions.
Bumpy Six Weeks in the Cardiovascular Intensive Care Unit
Sky wasn’t big enough or big enough, heart surgery— decision made after a thoughtful conversation with Frank Hanley, M.D.Chief of Cardiac Surgery, Heart Center, Heart Failure/Heart Transplantation Pediatric Advanced Cardiac Therapy (PACT) the team recommended that he go heart transplant list. This was difficult news for the family, as premature-sized donor hearts are rare.
“We wondered if this was really his best chance to survive,” Britt says.
After lengthy discussions with the care team and consideration of options, the couple decided to put Skye on the list for a heart transplant.
But Sky had other plans altogether. He decided to become a Miracle Baby, and surprisingly, his heart began to grow stronger on its own. It helped the plan take root.
“We are able to take in premature babies with rare and high-risk conditions and offer them the best possible path from a strong cardiac team in all areas. critical care and heart surgery To heart transplantsays Dr. Hollander.
Knowing when to act and when to refrain defines professional care. For Sky, this includes when to remove breathing tubes, feeding tubes, and IVs for troubled hearts. Helped Sky grow on her own.
“Our job is to give newborns with Ebstein’s malformation only what they need, nothing more, and support them carefully. To me, it’s exceptional care,” says Dr. Tacy.
“There were so many doctors working together as a team, but their egos weren’t part of it,” Britt adds. I have figured out a puzzle.”
Britt appreciated the way the doctors and nurses handed over certain aspects of Skye’s care to her, helping her to hold him despite the tube and breastfeed.
“Britt and Adam were dedicated to treating him like a normal baby. When he started breastfeeding, I knew he was getting stronger,” says Dr. Hollander. says.
Babies born with Ebstein’s anomaly often have one or more ventricular septal defects (VSDs). Sky had her VSD, which fortunately closed on its own over time. This is common.
of Betty Eileen Moore Children’s Heart Center It uses an unusual approach in which a cardiologist and a neonatologist (specialists who care for sick newborns) work together. cardiovascular intensive care unit (CVICU) determines the best next steps to support premature babies. newborn care at Stanford Children’s is currently ranked in the top 10 in the nation. US News & World Report.
“Having a neonatologist in the CVICU, focusing on the premature infant and considering the best course of action for the baby’s underdeveloped lungs, growth and development is essential for a positive outcome,” he said. increase. Sonia Bonifacio, MD, Skye’s Neonatologist. “While a cardiologist focuses on repairing the heart, a neonatologist’s perspective is more global, helping to support and protect babies so they can live healthy lives.”
Dr. Tacy will follow Sky’s life as chief cardiologist. Britt appreciated Dr. Tacey’s positive outlook during her pregnancy, despite her surprise during her pregnancy. In the end, we had Sky, a baby with nearly normal heart function today. Skye is the first child for a couple who have struggled to have healthy babies in the past.
“Before birth, we talk a lot about hope, rational and clear hope,” says Dr. Tacy. “Skye’s parents were very dedicated day and night to help him improve. I’m sure it was as good as any medicine they gave me.”
stanford children Cardiogenomics program— A dedicated team of cardiologists and genetic counselors dedicated to identifying hereditary heart diseases — Publishing the genetic findings Sky helped confirm, giving other patients a clearer path in the future We would like to make it available.
go home and grow up like a normal baby
When Skye was six weeks old, his parents received incredible news. Skye has moved from the top of the heart transplant list to the bottom. It’s time for him to go home. His heart transplant is on hold and may be permanent. So far, this miracle baby is growing stronger every day.
“He started laughing. It’s really sweet. He laughs a lot and likes to talk,” Britt says. “Every day he increases his ability to exist in this world.”
Skye may need surgery to repair his tricuspid valve in the future, but for now his heart is functioning fairly well.
“There are many cheerleaders at Sky’s Heart Center who are waiting, watching and wanting to see Sky in action,” Dr. Tacy concludes.
Learn more about cardiac care for children with complicated heart conditions >
