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Photo: Khoa Pham via Unsplash

When parents of infants in the neonatal intensive care unit can't be there around the clock, volunteer snugglers step in to ease the stress and provide a soothing touch

This month, A Beautiful Perspective is exploring touch in all its forms and contexts. Click here to read more stories from the TOUCH Issue.

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Ariah Sanders looks like a fantasy.

She’s a petite princess high up in a tower, the massive edifices of Chicago’s River North out her window on the 14th floor of Lurie Children’s hospital, a pink unicorn horn on her head, mittens on her hands, and tutus blooming around her toes. As she softly gets picked up from the crib, the breathing tube attached to her nose makes her look like an astronaut floating in space.

Ariah is asleep, barely stirring as Elizabeth Halpern, a volunteer at Lurie’s neonatal intensive care unit, brings her to her chest. So much of the touch Ariah has experienced in her young life has been negative and stress-inducing. When her parents, who live in the Chicago satellite city of Joliet, cannot be there to provide skin to skin contact or gentle cuddling, volunteers like Halpern make sure the infant is held, loved even.

Positive touch has a crucial impact on babies’ development that reaches well into adolescence. With parents of infants in the neonatal intensive care unit not able to be there around the clock—and with the infants of opioid-addicted mothers in need of comforting—volunteers like Halpern are becoming an integral part of neonatal care around the country.

Ariah’s parents are here today, however. Sparkle Stevens and Charles Sanders are excited to soon bring home their baby girl, born 11 weeks early. Once she can suck, breathe and swallow, as Stevens sums it up, at the same time, she can leave the hospital. Jobs, other children and the long commute from Joliet—since mitigated by accommodations at a nearby Ronald McDonald House—meant Ariah’s parents could not be there 24/7, no matter how much they wish they could. For them, the volunteers provide more than a medical benefit.

“When I’m at home, I’m like, ‘Oh my God, who’s there with my baby?’” Stevens says. “It was comforting to know that they had [volunteer cuddlers] come in and do that.”

Halpern has wanted to be a volunteer ever since she had her appendix out on Christmas Eve at six years old. “I remember how wonderful the volunteers were in the hospital,” Halpern says. “And I was like some day, I’m going to do that.”

As Halpern leaves Ariah’s room, a cry comes from next door.

“I hear another one calling me.”

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The Lyft driver was intimately familiar with Comer Children’s Hospital.

He’d been on the phone just that morning with his son, wishing him a happy 18th birthday. The boy and his twin sister had been born prematurely and had spent the first days of their lives in the hospital’s neonatal intensive care unit, among the most difficult and rewarding wards in the building. The son had survived, had just become an adult.

The daughter did not.

The infants in the NICU (pronounced nick-you) have a difficult introduction to the world. Exposed to lights, sounds and touches that are—despite doctors’, nurses’ and child life specialists’ best efforts—completely alien to what they should still be experiencing in the womb, the infants’ first days must be bewildering.

Past the automatic doors and sign on the floor which reads “Help keep our babies safe sanitize your hands” and into the Comer NICU are children as premature as 23 weeks (37 to 38 weeks is considered full term), as well as full-term babies who require intensive care. The design of the space is cheerful with whimsical accents and warm wooden floors, more resembling a nursery than a hospital in quiet moments. The alarm, synched from the babies’ monitors to a phone in the nurses station, is a reminder of what’s really at stake.

When parents can't be present, trained volunteer cuddlers comfort infants by giving them the warmth and tenderness of human touch. Patricia Prudente via Unplash

The infants here are impossibly small. Their limbs wave with the purposeless fury of sea anemones, and they have a variety of lines and tubes which sometimes necessitate, in the particularly feisty ones, enclosing their hands in capped sleeves to prevent their removal. Beneath giraffe-printed blankets, they are ensconced in body temperature incubators with positioning pillows, their lives written in the rounded spikes and undulating curves of the yellow, green, and blue lines snaking across the screens of their monitors. They are arranged in pods, either of incubators, bassinets or special cribs.

This is how we think of them, laying in their see-through surrogate wombs, a fraught but peaceful fight. In reality, their lives are painful, full of blood draws; surgical interventions; and the insertion and removal of skin probes, esophageal thermometers, feeding tubes and intubation. There are nose prongs and CPAP machines and nasal feeding tubes and subcutaneous IVs— peripheral lines on superficial veins or deep central lines entering through the umbilical cord or major veins of the arm and leg. All of these can lead these brand new humans to associate touch with negative emotions and pain.

The alarm, synched from the babies’ monitors to a phone in the nurses station, is a reminder of what’s really at stake.

“NICU babies, especially preterm babies, can have throughout their length of stay up to 300 painful procedures,” said Dr. Nathalie Maitre, neonatologist and developmental specialist at Nationwide Children’s Hospital in Columbus. “NICU babies have to deal with an incredible number of negative tactile and sensory experiences.”

Pathways in the babies’ brains can associate the approach of people and contact with these painful experiences. Positive touch helps to re-wire these pathways, laying the groundwork for healthy development and improved neurobehavioral performance, how the baby hits developmental milestones, like walking. Constantly stimulated and irritable babies can also make it difficult for nurses and doctors to ascertain when a baby is feeling discomfort; without a suitable baseline, one scream blends into the next. Skin to skin contact, wherein parents and close caregivers hold their babies completely shirtless and with the baby in nothing but a diaper, and parental touch is important to early development.

Maternal contact is especially beneficial for babies suffering from neonatal abstinence syndrome (NAS), a suite of complications caused by withdrawal from drugs the baby was exposed to in the womb. The opioid crisis has lead to a sharp increase in NAS babies, especially in rural and suburban areas where the pills profligate. The spike has some hospitals seeking more volunteers.

“Specifically for those babies, they are a challenge,” Catherine Ney, child life specialist at Comer, said by phone. “They’re much more irritable, and honestly, really the only thing that calms them is touch.”

Many parents can’t stay in the hospital around the clock. Bills, poor parental leave benefits, other children and dependents, and geographic distance can limit their time in the NICU. NAS mothers may face legal and social issues stemming from their drug use. At any given time, Dr. Maitre estimates, roughly 20 percent of parents on her ward are able to be bedside with their babies, and the nurses are responsible for the protection and care of all the infants.

NICU cuddling volunteers help provide positive sensory experiences when parents cannot.

“Having cuddler volunteer programs allows for babies to still get positive exposures when the parents can’t be present,” said Dr. Bobbi Pineda, an associate professor of occupational therapy at Washington University, which has conducted years of research on the impact of touch on infants. For parents on the lower end of the socioeconomic scale, who are systematically forced to spend less time with their babies, cuddlers are especially important. They fill a gap in the baby’s care.

But volunteers do not simply waltz into Comer and pick up a baby. First they must undergo a full background check, then train for 40 hours in the child life playroom, working and getting comfortable with the babies under the supervision of a child life specialist. Volunteers are trained in each stage of development and bedside activity, and with a letter of recommendation can move on to the cuddler program.

“It does take several months to get into the program,” Erica Luciano, coordinator of volunteer services at Comer, said by phone. “It’s quite extensive.” The training continues at the NICU, including knowing the proper positions and levels of stimulation for babies—one may be ok with gentle rocking, another overwhelmed—and getting used to holding babies with lines.

Babies are pre-wired to be social beings, Ney said; they need to connect on a human level. “By giving them those opportunities with as many different people as we can in the hospital, it really helps support their growth and development tenfold.”

Babies in the neonatal intensive care unit can have up to 300 painful procedures during their stay. Positive touch is crucial for their future development. Rawpixel via Unsplash

“I just love babies, and I always liked to cuddle them,” Frank Dertz said by phone. Dertz is a baby-snuggling pro, a veteran volunteer who has been cuddling at Comer—where his daughter works in the NICU—for over a decade.

Dertz has always felt comfortable around infants. Some clasp their hands around his finger and squeeze tight, or respond to his heartbeat, and can be felt relaxing in his arms.

On days when he volunteers, Dertz checks in at the hospital and heads to the ward, where he goes from pod to pod to find out who needs a cuddler. Before holding the baby, he sanitizes his hands, puts on a smock, and has the nurse hand him the infant, which is held almost always sitting, mere feet from their bed. Then, using the cues the baby provides and his volunteer training and experience, Dertz provides some of the positive touch NICU babies desperately need, including the difficult NAS babies. Dertz considers his cuddling the most rewarding experience in the world; parents sometimes thank him for being there when they cannot.

“I just thought these babies have a very rough start to life, if there’s some way I can help,” said Harvey Doremus, a volunteer at Nationwide Hospital for four years this February. Doremus, now retired, is continuing in a sense his professional work; a former employee of the Ohio Department of Health, he worked on reducing infant mortality. Doremus finds the best ways to comfort and stimulate the baby, depending on their preferences and medical needs, whether it is cradling in the arm, holding them upright, gentle rocking or talking to them. NAS babies cry—scream—regularly, Doremus said; patience is a must on the NAS ward.

With the proper education and experience, volunteers and cuddlers bring a little positivity to  these babies’ painful early days, the impacts of which can last for years. And the benefits go both ways.

“I’m so grateful,” Halpern, the Lurie volunteer who facilitated Ariah’s spacewalk, said of her ability to help babies and their families.

“It’s a tough ward,” Dertz said. “You fall in love every day.”