Hefty Nicknames for 2019’s Tiniest Baby

Haven, 15 days old, with mom Amanda

There’s a little superhero in the Neonatal Intensive Care Unit (NICU) at Lucile Packard Children’s Hospital Stanford. His name is Mighty Peanut, and his superpower is surviving enormous odds that come with being the tiniest baby born at Packard Children’s in 2019, and likely one of the tiniest babies born in the United States this year. The neonatology care team, currently ranked sixth in the nation by U.S. News & World Report, welcomed Haven on New Year’s Day, 2019.

“At first, the nurses called him Peanut because he is the smallest baby in the NICU. After his intestinal surgery, they called him Mighty Peanut because he survived,” says his mother, Amanda Smith.

Haven Greyson Smith is a micro-preemie, a term given to babies often weighing less than 1,000 grams at birth or born before 28 weeks’ gestation. Haven was much smaller, weighing just .9 pounds (410 grams) at birth and born at only 25 weeks’ gestation.

“Babies this small are extremely uncommon. We care for just a few each year. Despite his small size, we were able to support him in our NICU Small Baby Unit and keep him alive,” says Alexis Davis, MD, a neonatologist at Stanford Medicine Children’s Health, and medical director for Packard Children’s NICU.

Being so tiny put Haven at risk for health problems. Amanda’s pregnancy was complicated by intrauterine growth restriction, which means he wasn’t growing like he should in the womb, leading to his early delivery. The obstetrics team in the Fetal and Pregnancy Health Program (FPHP) at Packard Children’s diagnosed growth restriction during a prenatal ultrasound and recommended that Amanda be hospitalized for close monitoring and a steroid injection to help Haven’s lungs mature.

“Our aim is to maximize time in the womb to allow a baby to mature, but sometimes early delivery is necessary to avoid a stillbirth,” says Amy Judy, MD, a high-risk obstetrician in Maternal-Fetal Medicine at Stanford Medicine Children’s and the FPHP.

The team decided that the risks of continuing the pregnancy were greater than what Haven would face as a premature infant. He became not just one of the first babies born at Packard Children’s in 2019, but the smallest—a title he still holds today.

Had Haven been just 10 grams lighter, he would have made the nation’s Tiniest Babies Registry, managed by University of Iowa Health Care—a list of babies born 400 grams or less. There are only 219 babies listed for the last 20 years. To put his tininess another way, the U.S. Centers for Disease Control and Prevention (CDC) says that only 1.4 percent of babies born each year weigh less than 1,500 grams. Haven was less than one-third of that.

Breathing problems are common with micro-preemies, and Haven is no exception. Packard Children’s Small Baby Unit, also known as the Nest, has developed specialized ventilator protocols to gently assist the breathing of micro-preemies to promote a gentle approach and minimize later breathing complications. This approach allowed Haven to finally breathe without ventilator support at six weeks of age and just over 2 pounds (1,030 grams). However, growth-restricted babies are also at risk for developing later lung complications. The Packard Children’s Cardiac and Respiratory Care for Infants with BPD (CRIB) Program Care Team was established to address complications of prematurity. The CRIB team watches Haven closely to monitor his chronic lung disease and pulmonary hypertension.

At the weight and length of a soda can, Haven needed surgery due to a dangerous condition, strangulated hernia, in which blood supply to the bowel is cut off. A pediatric surgeon performed an emergency operation to remove part of Haven’s intestine.

“Can you imagine operating on a baby that small?” says Amanda. “That skill level is only at a few hospitals nationwide. His survival was hour by hour and earned him the nickname Mighty Peanut. From me, it also earned him the name Mr. Miracle.”

Despite the odds, Haven keeps improving. He was placed on a ventilator when born. He has now graduated to only needing oxygen. He has always needed a feeding tube. Now, he’s learning to take a bottle.

Twice a week, Amanda meets with a multidisciplinary team especially formed to care for Haven. The Nest team provides not only medical care but also developmental care, as well as emotional and logistical support for the family. Haven’s team includes doctors; nurses; respiratory, physical and occupational therapists; developmental specialists; pharmacists; a social worker; and a nutritionist. He also receives care from a pediatric gastroenterologist, nephrologist and ophthalmologist for specific needs.

“With micro-preemies, we worry about brain injury, but so far Haven’s scans have been reassuring. We have every reason to be optimistic about his neurologic outcome,” Dr. Davis says.

As a tribute to the doctors and nurses who care for Haven, Amanda has dubbed him Dragon Slayer. She explains that he slays every health challenge that comes his way, but he’s not doing it alone.

“I tell him that he has knights who live around his plastic castle, which is his incubator, that protect him—the doctors and nurses from his care team,” she adds.

Amanda and her parents, Judy and Bob, stay at the Ronald McDonald House, just steps from the hospital. Recently, Haven was moved to the recently built new wing of the NICU. Amanda appreciates the privacy and comforts of his new room, including a specialized kangaroo chair for comfortably holding Haven, and hummingbirds outside his window.

“If we weren’t here at Packard Children’s, I would have lost him several times over. Moms with high-risk pregnancies need to be here. The elevated level of care is not just in the big saves, but also in the small details. I can never repay the doctors and nurses for what they’ve done for us,” Amanda says.

At birth, doctors gave Haven a 10 percent chance of survival. On July 1, he’ll be six months old. He now weighs 8.3 pounds, and as Amanda puts it, “he’s eight times the Haven he was when he was born.”

Haven’s personality is showing. He grins, babbles and watches what’s going on around him. Yet if you were to visit Haven in his NICU room, you’d likely get a scrutinizing stare. It’s generated another nickname altogether.

“People call him the Rock after actor Dwayne Johnson because of the way he can move his eyebrows. If Haven doesn’t know you, you’ll get raised eyebrows and a long, sideways glance,” Amanda says.

From the tiniest of beginnings, this little guy’s big personality and heart keeps growing, thanks to Packard’s Children’s.