Smallest Baby Born in 2020 Turns 2 and Rules the Day

Om is a little king. He rules his household, but in a mischievous and fun-loving way.

“He thinks he owns everyone and everything around him. He’s strong and brave. Nothing stops him, or makes him sad or scared,” says his mom, Dhara.

The couple was deciding between two names, but when he was born, they knew he was “Om.” In Sanskrit, om is the sacred syllable. It is the sound of the universe, encompassing all other sounds within it.

“The name relates to creation, sustainability, and liberation,” Dhara says. “It’s everything—life, death, and beyond death. He embodies that idea of ‘I am everything.’”

Om, who was born very early, faced death and survived. Doctors don’t always know why one extremely premature baby makes it while another does not. But his parents know why Om survived. 

“His personality absolutely drove his survival and recovery,” says his dad, Aditya. “He lives up to his name.”

As first-time parents, having a micropreemie (a baby weighing less than 2.2 pounds or born before 28 weeks’ gestation) was understandably overwhelming for Dhara and Aditya, who live in the Bay Area and have challenging jobs in the tech industry. They faced one major health challenge after another.

“Om was the smallest baby born at our hospital in 2020 who survived and was treated in our Neonatal Intensive Care Unit (NICU),” says Melissa Scala, MD, neonatologist. “Om was born one day short of 25 weeks’ gestation, weighing 420 grams (.9 pounds).”

That’s about the size and weight of a soda can.

Preeclampsia led to fetal growth restriction

Charlotte Conturie, MD, maternal-fetal medicine (high-risk pregnancy) specialist, met Dhara on the day of her delivery, exactly a week after she was admitted to Stanford Medicine Children’s Health.

“Dhara had severe preeclampsia, which can be very dangerous for both the mom and the baby,” Dr. Conturie says. “Preeclampsia is challenging to manage, but it is something we manage all the time at Stanford Children’s Johnson Center for Pregnancy and Newborn Services.”

Preeclampsia is a high-risk pregnancy condition characterized by high blood pressure, protein in the urine, and swelling due to fluid retention. According to the Centers for Disease Control and Prevention, it occurs in 1 in 25 pregnancies in the U.S. It usually sets in toward the end of a pregnancy, but it can occur anytime after 20 weeks. Early preeclampsia is less common, and the cause can be unknown.

“It affects the placenta, which is what feeds a baby nutrients and oxygen in the uterus,” Dr. Conturie says.

Om had fetal growth restriction, which means he wasn’t growing like he should. His measurements were about three to four weeks behind his gestational age, and his probability to survive was low.

“Our aim is to maximize time in the uterus to allow a baby to mature, but sometimes early delivery is necessary to avoid a stillbirth,” says Amy Judy, MD, maternal-fetal medicine specialist at Stanford Children’s Health’s Johnson Center for Pregnancy and Newborn Services. “We are fortunate to be able to provide the highest level of care for moms and babies who are severely or critically ill.”

Dhara and Aditya received intensive counseling on Om’s chances of survival and on what they could expect in regard to immediate and long-term health problems with extreme prematurity.

“The couple spent a lot of time discussing his outlook with our team, so they could come to the best decision for their family,” Dr. Conturie says. “They asked us to do whatever we could to save Om.”

Dhara and Om needed advanced care to achieve a good outcome. At Stanford Children’s Health’s Johnson Center for Pregnancy and Newborn Services, a large multispecialty team cares for pregnant women and fetuses with complex health conditions. The team deeply understands preeclampsia and fetal health. That knowledge, coupled with the highest level of neonatal intensive care from nationally recognized neonatologists, meant all the difference for Om.

“We met Yair Blumenfeld, MD, early on, and he walked us through the significance of Stanford’s multiple specialties and how important it was to get care from a high-level NICU. It was the best advice we received,” Dhara says. “Also, he was honest about our tough journey ahead without scaring us, and that’s difficult to do.”

The Nest: A special NICU space for micropreemies

When preeclampsia threatened the baby’s oxygen levels, mom underwent an urgent cesarean section. Immediately after birth, Om needed chest compressions to keep his breathing going. He was then admitted to the Nest, a dedicated NICU space for babies born before 29 weeks’ gestation. The Nest has advanced technology to care for fragile infants who need intensive support for their lungs, feeding, and nutrition to help them grow.

“He was amazingly tough for weighing just 420 grams. He had rocky moments because you don’t have babies this small who have a smooth ride,” says Melissa Scala, neonatologist and director of NEST. “That’s why the Nest has specialized protocols that focus on the latest evidence, helping micropreemies survive. We watch these tiny babies like hawks, and we know exactly when and how to respond.”

In the Nest, Om was put on a ventilator and then, as he grew stronger, moved to a special bubble continuous positive airway pressure (CPAP) machine, which provides humidified air through small tubes that fit into the baby’s nostrils, delivering a continuous flow of air to improve a baby’s gas exchange and promote lung growth in the gentlest manner.  

“When he came off of the ventilator at around 2 pounds (1,030 grams), that was a trajectory moment for us. It was the first time we really saw our baby and were able to hold him and cuddle him,” Dhara says.

After Om reached 32 weeks, he graduated to the regular NICU. If his lung development was the only hurdle, it would have been easier for his parents to handle, but it wasn’t. Because he didn’t have the chance to fully develop in the uterus, he had problems with his eyes, gut, lungs, and swallowing mechanism.

“No matter how rough it got or how sick he felt, he was always smiling and giggling,” Dhara says. “Looking back, he was teaching us to relax and let him lead.”

In addition, Om had a patent (open) ductus arteriosus (PDA)—a natural connection between the main arteries of the heart and lungs that closes on its own after birth, but in premature babies it can stay open. Stanford Medicine Children’s Health has a specialized Preterm PDA Closure Program that brings cardiologists, interventional cardiologists, and neonatologists together in the Cardiac Catheterization Lab to place a revolutionary device to close the opening, specifically designed for low–birth-weight babies, like Om.

“Not many pediatric centers offer minimally invasive PDA closure via cardiac catheterization on very premature babies,” Dr. Scala says. “At Stanford Children’s, we have the resources and advanced skills to take care of these extremely small babies. It’s where we really shine.”

Besides feeling proud of the care that Stanford Children’s can provide, Dr. Scala is proud of the family and how they partnered with the medical team to care for Om.

“The family is wonderful. We did our jobs, but their job of breastfeeding Om, holding him skin-to-skin, and constantly loving him was equally important,” she says.

Highly specialized CRIB program supports Om’s lungs and heart

Om was also diagnosed with bronchopulmonary dysplasia (BPD) (chronic lung disease) and pulmonary hypertension (high blood pressure in the lungs). While in the NICU and still today, Om has been cared for by the Cardiac and Respiratory Care for Infants with BPD (CRIB) Program—a joint inpatient/outpatient program. Doctors at Stanford Children’s created the highly advanced CRIB program because of the constant need for communications between cardiology, pulmonology, and neonatology experts on preemies who have both lung and heart disease.

Because the lungs are the last organ to develop, breathing problems are common with micropreemies. Underdeveloped lungs have fewer blood vessels, which puts pressure on the heart to pump blood, causing high blood pressure in the lungs.  

“We didn’t realize how connected the heart and lungs are and how important it was to have doctors talking to each other and figuring out how to resolve his issues,” Dhara says.

The coordinated, multispecialty program means convenient, seamless, and exceptional care for highly complex preemies in the hospital and through the years as they grow.

“We screen all premature infants with bronchopulmonary dysplasia (BPD) with an echocardiogram at 36 weeks. That’s how Om was diagnosed with pulmonary hypertension. It’s important to identify because a diagnosis of BPD and pulmonary hypertension told us that he was at higher risk for mortality or other medical problems in the first two years of life,” says Michael Tracy, MD, pediatric pulmonologist and co-director of CRIB.

Om was slowly weaned off of oxygen during his NICU stay to allow his lungs to grow healthy tissue, and he received medications to support his lungs. “Besides supporting his heart and lungs, our nutritionists helped support his growth and feeding,” Dr. Tracy says.

Today, Om goes to CRIB’s outpatient clinic to get check-ups on his heart and lung function. The program provides regular checks through kindergarten. CRIB social workers also help families coordinate additional services, such as occupational therapy, speech therapy, and developmental and behavioral support.  

Clearing hurdles one by one after discharge

Just before Om was ready to go home, a final hurdle presented itself: aspiration. Aspiration means that when a baby swallows, some liquid or food enters the airway instead of going down the esophagus to the stomach. Premature babies are at a higher risk for aspiration because their ability to swallow is not completely developed, and they may not be able to produce a coordinated and well-timed swallow. Some children may aspirate liquids while swallowing without any signs or symptoms that this is occurring. This phenomenon, called silent aspiration, is not uncommon in premature infants and was noted to occur during Om’s swallow study.

“He was just two weeks to discharge and he was breastfeeding just fine, but then he failed a swallow study (a test where doctors watch via X-rays or a flexible camera while food travels from the mouth to the esophagus),” Dhara says.

The Voice and Swallow Program at Stanford Medicine Children’s Health stepped in to evaluate Om’s swallow function after breastfeeding and to help treat Om’s aspiration. The multidisciplinary team at Stanford Children’s is made up of otolaryngologists, speech-language pathologists, occupational therapists, and nutritionists. At the Stanford Medicine Children’s Health outpatient swallowing clinic, Om was evaluated by an otolaryngologist and speech-language pathologist. He underwent an endoscopic evaluation of swallowing with breastfeeding, which provided reassuring information that breastfeeding was safe to continue.

“Although this clinic is also a diagnostic clinic, it is primarily one where the multidisciplinary team provides support to patients and families with complex medical problems,” says Douglas Sidell, MD, otolaryngologist. “When it comes to feeding and swallowing problems in premature infants, there is rarely a simple fix to the problem. Instead, it takes time, support, and teamwork along the way. We are happy and fortunate to be able to provide that here at Stanford Children’s Health.” 

Over several months, Om received feeding and swallowing therapy to improve his feeding and swallowing function and to reduce his risk of aspiration. He needed a nasogastric (NG) tube to ensure that he was getting enough nutrients to grow. An NG tube goes from the nose to the stomach, carrying nutrients and liquids. During that time, Dhara was able to safely continue breastfeeding to keep up his interest in eating naturally by mouth.

“He had the NG tube for nine months after discharge. When I went to his follow-up doctor appointments, I’d carry him, his oxygen, and his NG tube. It was so much,” Dhara says.

He still needed supplemental oxygen when discharged, but his lungs had made good progress. Keeping a baby free of lung infections when they go home is crucial, and Dr. Tracy credits the family with doing a great job keeping him safe from exposure. The key to Om’s lungs getting better is healthy lung growth, which happens in the first two to three years of life.

Thankfully, by his first birthday, Om passed a swallow study, meaning he was no longer aspirating. He was cleared to feed solely by mouth, and he no longer needed his NG tube. Around the same time, he was able to stop oxygen. A final hurdle was surgery for an inguinal hernia, a bulge in his groin area, for which premature babies are at an increased risk.  

“Without the oxygen tube, he became more mobile, which made him hungrier, so he ate more. It was this positive circle,” Aditya says. “Today, he loves to eat all kinds of foods, and he has definitely found his freedom with walking.”

While Om is still small and working through physical and speech therapies, he is meeting all of his developmental milestones at his own pace—something that is truly a victory for such a premature baby.

“Coming out of prematurity is a long road,” Dhara says. “Even though life may seem normal from the outside, we continue to spend a great amount of time ensuring Om receives all the necessary therapies and goes through all the required follow-up visits.”

Turning 2 and ruling the roost

Om recently turned 2, and his family celebrated in major style—they threw a big party with lots of family and friends. Of course, he walked around greeting everyone with a warm smile, like the benevolent little king that he is.

“Om definitely got the best care at Stanford Children’s. The NICU doctors and nurses are some of the best people we have ever met. They helped us navigate rough days and cheered with us on good days,” Dhara says. “Today, all we can say is wow. He is enjoying his life like nothing happened. It’s tremendous.”

Om is content in his little kingdom, where he can watch fire trucks come down the street from the nearby station, read picture books, play with toy trucks and cars, and dance to his favorite songs.

“He rules our days. He’s naughty, but rightfully naughty. He’s the driver of his life. We are learning to not overstress and to trust him and let him lead,” Dhara concludes.