If things had gone as planned, Tuesday would have been the day E’Layah Faith Pegues was born. But she came nearly 14 weeks early, on Sept. 23, weighing only 10 ounces. That made her the smallest surviving baby to be born at Carolinas Medical Center in Charlotte, N.C., and one of the smallest in the world.
“E’Layah is our miracle baby girl,” says her mother, Megan Smith.
She and her fiance, Eric Pegues, celebrated their baby’s original due date with a news conference Tuesday in the neonatal intensive care unit at CMC’s Levine Children’s Hospital, where E’Layah has lived since birth.
Still tiny, E’Layah (pronounced ee-LAY-uh) weighs 3 pounds, 10.7 ounces today – about five times her birth weight – and is expected to go home in the next week or two.
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“Five or even 10 years ago, it probably wouldn’t have been possible for her to survive, much less thrive,” said Dr. Andrew Herman, a neonatologist and chief medical officer at Levine Children’s Hospital.
He credited the baby’s health and growth to a “combination of talent, perseverance and creativity” on the part of the medical team, and to her supportive and loving family.
Prematurity was her only problem at birth, he said. Her organs and intestines just needed time to develop and mature. The medical team started by giving her a “trickle” of breast milk every day and slowly increasing the amount, Herman said. Their goal was to give her enough nutrition to grow, without overloading her with fluids. Today, she’s taking an ounce of formula by bottle eight times a day.
“Growth is her ticket out of here,” Herman said. “I expect E’Layah to have a wonderful life and to be a healthy kid.”
There were many moments when things could have turned out differently. There was the day she was born, by emergency C-section, after Smith noticed the baby was no longer moving inside her. And there was the time Smith got a call from a nurse, at 3 in the morning, to let her know E’Layah had to be revived with CPR.
Smith wiped tears as she remembered how frightening it was to be awakened with such news. But every time doctors told them E’Layah might not make it, Smith and Pegues said they refused to listen.
The couple chose to give their daughter the middle name Faith. “We weren’t going to give up on her,” Smith said.
Advances for preemies
In recent years, advances in medical care have meant that smaller babies have been able to survive.
Locally, the smallest known surviving baby was born Jan. 9, 2012 at Novant Health Presbyterian Medical Center in Charlotte. The child, Kenna Claire Moore, weighed 9.6 ounces, or 272 grams. Her parents continue to document her progress on a “Keeping up with Kenna” Facebook page.
Kenna is listed as the fifth smallest baby in the world in an online registry of so-called “micropreemies” – born weighing less than a pound. “The Tiniest Babies” list is compiled by Dr. Ed Bell, a pediatrics professor at University of Iowa, who started keeping track after the 1994 birth of a baby weighing only 400 grams at his Iowa hospital.
On that list, the lowest birth weight recorded for a surviving infant is for the second of twins born in Illinois in 2004, weighing 260 grams. The same baby is recorded as the smallest in Guinness World Records.
Bell acknowledges his list is not comprehensive because it relies on voluntary reporting. E’Layah is not yet on the list, but at 10 ounces, she would be about 23rd, along with two other babies who also weighed 305 grams at birth.
Herman, the Levine Children’s neonatologist, acknowledged Tuesday that, at first, he wondered if E’Layah would survive. “She was so small,” he said. “It was really at the limit of what our technology can do.”
Initially, all the blood in her body totaled less than an ounce, so even taking a drop for testing was tricky, he said. The baby’s care team – who affectionately call her “tater tot” – developed a special combination of formula and breast milk to keep E’Layah healthy and growing because traditional methods would not work on such a small baby.
“We are now feeding her a combination of protein, fat, sugar, electrolytes and vitamins that will help prevent infections, mature her intestines and help her gain weight,” Herman said.
Problems with pregnancy
Smith, 29, had a difficult pregnancy. In the early months, she battled morning sickness and high blood pressure, a condition called pre-eclampsia. And at about five months, Pegues, 31, said he rushed her to the hospital twice when he thought she was having strokes.
In August, Smith’s obstetrician sent her to CMC when it appeared the baby was not growing normally. By Sept. 21, she said doctors noticed there was too little fluid in the placenta, and two days later, Smith noticed the baby stopped moving. That’s when she was taken for an emergency C-section.
The next day, Smith saw her baby, about the size of a small kitten. “I was scared,” Smith said. “She was so little.”
In the first two weeks, E’Layah had several blood transfusions and struggled to gain weight. Doctors “prepared us for the worst,” Pegues said. “They would say, ‘There are a lot of hurdles to overcome.’ But we started jumping them one by one.”
E’Layah’s parents continue taking turns feeding her and spending time in the NICU. Pegues just finished school to become a truck driver, and Smith plans to be a stay-at-home mom, also caring for two step-children, ages 5 and 11.