Neonatal Intensive Care Unit | Patient Stories

Make way for Choo-Choo Charlie

“My first thought when we had Charlie so early was, ‘why is this happening?’” Kate Wittemann recalls. “But now I look back and realize that Charlie gave us something to focus on and work towards.” Before their son Charlie arrived 15 weeks before his due date, Kate and her husband, Paul, were at a turning point in their lives. They were “struggling to find a purpose,” Kate remembers. Then Charlie was born on Valentine’s Day of 2015 via emergency caesarean section. Life for the Wittemanns has been a whirlwind full of purpose ever since. Born weighing just 1 pound, 15 ounces, Charlie earned the nickname “Choo-Choo Charlie” from his respiratory therapist because he progressed so rapidly, like a freight train chugging along the tracks. Breathing and crying on his own as a 25-week preemie, he has fascinated doctors and nurses since birth — they’re almost certain Charlie was waving as he was being delivered.

No more missing out: Bouncing back after an SCT

Like many parents, Kat Shnayder and her husband, Serge, got creative as they prepared for the birth of their daughter, Emilya: Kat took to Pinterest to design the nursery, while Serge learned woodworking and created handmade toys. But their productivity served another purpose, too: “We needed to stay occupied,” explains Serge.Months earlier — on a Friday before Martin Luther King Jr. Day — the couple was at a routine ultrasound appointment to learn their baby’s sex when the clinician called them aside. At the same time they learned that they were having a girl, they were told that she had a tumor at the base of her tailbone called a sacrococcygeal teratoma (SCT). Although SCTs are usually benign, they can grow to be very large, which can put pressure on surrounding organs and cause the fetus’s heart to work harder, potentially leading to hydrops, or heart failure. Suddenly, what should have been a joyful moment was fraught with fear and apprehension.

Inside the NICU: Shining light on the healing power of touch

newborn baby sleeping in a NICU bed

Traveling through Boston Children’s Neonatal Intensive Care Unit (NICU), you feel the warmth of natural light and a soothing sense of calm. One mom, leaning delicately over her son’s bedside, caresses his forehead and gently whispers a lullaby. Only a few steps away, a father rests in a chair with his tiny son on his chest.Lifesaving technology fills the 24-bed NICU and a reassuring team of specialized physicians, nurses and Child Life Specialists monitor, treat and embrace their delicate patients. Nearly 15 million babies, about 1 in 10, are born prematurely each year and in many cases, require complex medical and surgical care. Equally critical to preemie and newborn health is the healing power of touch, experts say. “We encourage families and our own staff to offer gentle touch and physical affection as part of our approach to managing pain and agitation, and promote healthy development,” says Boston Children’s Neonatal Intensive Care Medical Director, Dr. Anne Hansen.

Surgery to remove blood clot to save London's kidneys

newborn baby resting in a hospital room with her father standing above her

Todd and Lindsey Taylor had barely settled in at home in Syracuse, New York with their new baby, London, when their world turned upside down. London, who had seemed perfectly healthy at birth, woke up nine days later vomiting and struggling to breathe. They rushed her to their local children's hospital. “The doctors did an ultrasound and found a large blood clot in her aorta that was blocking the flow of blood to her kidneys,” says Todd. “They said she was in near fatal condition when we arrived, but they put her on dialysis and were able to stabilize her.”

After the NICU: Become an outpatient visit guru

The Neonatal Intensive Care Unit (NICU) at Boston Children's Hospital is unlike any other place. In the NICU, a team of top-notch providers cares for your child around-the-clock. Once home, you must quickly adapt to caring for your fragile baby on your own, which includes navigating the world of outpatient visits. Our twins, Drew and Emma, were born nine weeks early. After a long stay at Boston Children's NICU, my husband Jon and I began juggling multiple outpatient visits with Emma.

The Gift of Grandmothers

woman holding infant in the hospital with medical professional smiling nearby

Nancy sits in a tiny hospital room in New York City, reading to Sophie, her infant granddaughter who is quarantined while she battles a respiratory virus. She keeps vigil over Sophie so her daughter, Katie, can safely spend time with Sophie's twin sister, Maddie, and her son-in-law can work to support the family. “There was no one to talk to and nothing to do,” remembers Nancy, “So for days, I just sat with Sophie and read her the A.A. Milne poems my mother used to read to me. This is a grandmother's love. It's putting your own life on hold, so your granddaughter has someone who loves her by her side. It's taking care of your children, so they can take care of theirs.


A fighting chance for Eva

two young children kissing the cheeks of an infant

Early in 2015, Jennifer and Vincent Ramirez had everything they wanted — two healthy children: Violet, 5, and Vincent, 3, and they had just bought a new home in Salt Lake City. The couple decided to try for a third child. Jennifer learned she was pregnant in a few weeks. “Everything was going according to plan,” recalls Vincent. In July of 2015, the entire family packed into an exam room for Jennifer’s five-month ultrasound. “The doctor wasn't talking much, and the ultrasound seemed to be taking longer than usual,” says Jennifer. After the ultrasound was done, the doctor asked the couple if they could put their children in another room while they discussed the results.“There's something wrong with your baby's head,” the doctor reported. The week after the ultrasound Jennifer had a fetal MRI. Eva's diagnoses: An encephalocele and microcephaly.


A salute to Noah’s heroes

Noah Hamm at the doctor with his mother

Noah Hamm has escaped death more times than his mother Danielle can count. And hes only 3. Since Noah was born there have been three constants in his life: Noah's knack for near misses, his family and a neonatologist/pulmonologist who's always there with the right care for Noah … and the right words for his family.“I tell Larry [Dr. Larry Rhein] he’s our George Bailey,” says Noah’s mom Danielle.Larry gave me hope. Even when things were bad, I always felt better when Larry was there. Noah was a 29-week twin when Danielle’s water broke prematurely. “The only condition I thought I had to worry about after having a STAT C-section was prematurity,” she recalls. Six hours after Noah and his sister Dakotah were born at Brigham and Women’s Hospital, specialists told Danielle and her husband Brendan their newborn son needed surgery for esophageal atresia, a gap in his esophagus, and tracheoesophageal fistula, an abnormal connection between his esophagus and trachea.


Two perfect reasons to pay it forward

Katie and Paul Litterer with their two children, playing outside

In 2008, Katie and Paul Litterer were living in New York City and expecting identical twins. When Katie was 26 weeks pregnant, they bought a house near Boston to be closer to family. The following week, Katie went into early labor, resulting in an emergency C-section and the premature birth of their daughters. Their new house would remain empty for months. Sophie arrived first at a tiny 1 pound, 15 ounces and let out a cry. Maddie followed her sister at an even tinier 1 pound, 10 ounces. "I didn't hear anything," Katie remembers. “They just ran out of the room with her."


Preemie Jace Perkins rocks 'n rolls through 137 days in the NICU

preemie baby Jace Perkins with NICU tubing on his nose, being held by his mother

Melyssa Perkins was 25 weeks into a healthy pregnancy with her first child when she began to have abdominal pain. She called her local nurse who said she was probably dehydrated, but when water didn’t help and the pain increased, Melyssa and her husband Jamie rushed to nearby Beverly Hospital, where they discovered that she was fully dilated.

 


Ella’s story: Two rare diseases and the NICU roller coaster ride

Everyone tells you that the NICU is a roller coaster ride. What they don’t tell you is that it’s a customized roller coaster ride just for you. You never know what’s coming at you next,” says Carrie Shea, whose daughter Ella spent her first three months of life in Boston Children’s Hospital NICU. Today, Ella is a “remarkably normal little girl,” says Carrie. It’s quite a feat for the three-year-old who was born with GACI (generalized arterial calcification of infancy), an extremely rare condition with an 85 percent mortality rate, and diagnosed with PKU (phenylketonuria), a second rare genetic disorder, a few weeks after birth.