Dr. James Liau

Dr. James Liau: How I help families navigate the cleft care journey

Written by Dr. James Liau, a plastic surgeon at UK HealthCare who specializes in cleft lip and palate repair.

July is a special time of the year for me since it’s Cleft and Craniofacial Awareness Month.

Although I do all aspects of plastic surgery, pediatric cleft care is what I’m passionate about.

So, what are clefts and how are they treated? What can you expect if your child is born with a cleft? I’m here to help answer those questions and help you and your family navigate the cleft care journey – from birth through adulthood.

What is a cleft?

A facial cleft is an area where there is an absence of tissue or abnormal tissue. Although there are multiple types of clefts, cleft lips and cleft palate are the most common. Some patients may have both cleft lips and cleft palate, while others may have only cleft palate.

Unfortunately, we’re not entirely sure why clefting occurs. Although clefts are a lifelong condition, I feel very strongly that there is no reason they should limit a child’s potential in life.

Treatment in the first year of life

I like to fix cleft lips at about 4 to 6 months of age, and then fix cleft palates around 10 months to 1 year of age. Timing varies for each family. I always tell parents that the most important thing is to go home, bond with their newborn and not worry about the cleft until at least several months after birth.

As a parent myself, I understand that no one wants their child to have surgery. Unfortunately, a child with a cleft lip and palate will need two surgeries in their first year of life. Both surgeries will be overnight stays in the hospital to make sure pain is controlled and the family is comfortable with the postoperative care.

The lip repair is the most dramatic, but postoperative care is relatively easy. Cleft palate repair can make eating challenging as it requires the child to temporarily be on a diet of only thickened liquids, such as applesauce.

Childhood

After the first year, cleft care is put on the back burner as we monitor speech development. As a child nears the age of 3, we have to be vigilant about their ability to communicate. Kids with cleft palates can develop hyper-nasal speech, a condition that occurs when the palate can’t close off the nose. This is called velopharyngeal insufficiency, or VPI.

If this can’t be fixed by speech therapy, another surgery may be necessary. I like to do this before the child starts preschool or kindergarten, as this is when kids really start interacting with their peers and speech becomes very important in making new friends.

At this time in a child’s life, we can also discuss whether a small touch-up to the lip or nose is necessary. I defer this decision to the child and family. Kids don’t comment negatively on physical differences until they’re at least 7 years old, so touch-ups at this age are only necessary if the cleft is bothering the child. My goal is that the first repair is perfect enough to avoid a revision!

Between the ages of 7-9, the child will start seeing an orthodontist. If there is a cleft in the gum line, we will need to put a bone graft in that area when the child’s permanent teeth come in, which usually occurs around this time.

The timing of this procedure can usually be coordinated over several months, and most families choose to do it during summer or winter break. For this operation, I use a less-invasive technique that involves harvesting bone from the hip. Postoperative care depends on the child: Some kids will stay overnight for pain control, while others will not.

Teenage years into adulthood

In the teen years, we can revisit the idea of a revision. This is when I do a lot of rhinoplasties, or nose reshaping. Naturally, we are focused on getting the nose to look more symmetrical, but we are also focused on opening the nasal airway so that breathing through the nose is normal. This is an outpatient procedure.

During the teen years, we may also do jaw surgery to improve how the face looks, and in more severe cases, to improve the airway in the nose and upper mouth.

As you can see, cleft care requires lots of coordination over many years. I tell all my families, “My role is to be your quarterback.” Raising a child is hard enough without worrying about cleft care, so my job is to make sure we don’t miss anything and to seamlessly work cleft care into what is happening in the family’s life.

I’m always honored to be able to help patients and their families navigate the process of cleft care. All children deserve a chance at a bright future, and I hope my work can help make that happen.


Next steps:

Following a few grilling safety tips can keep the focus on good food and fun, not on first-aid.

Planning a cookout? Follow our grilling safety tips

Cookouts and barbecues are a staple of the summer season, but firing up the grill can be dangerous if you don’t follow the proper precautions.

Each year, grilling accidents cause nearly 10,000 home fires and send 16,000 people to the emergency room. But following a few grilling safety tips can keep the focus on good food and fun, not on first-aid:

  • Use grills outside only. Even small grills used inside create fire hazards, plus they release carbon monoxide, which can be fatal to people and pets without proper ventilation.
  • Keep the grill away from the home, deck railing, overhanging tree branches and any flammable decorations. Make sure nothing flammable can blow onto the grill.
  • Use the right lighter fluid for your grill, and store it away from the heat and out of the reach of children.
  • Establish a child- and pet-free zone. Make sure children and pets are indoors and/or being supervised by someone other than the cook. And keep them at least three feet from the grill. Burns from contacting a hot grill are especially common in kids under 5.
  • Clean the grill well before use. Grease and fat can build up on the grill and contribute to fires.
  • Don’t overload the grill. Excess fat dripping on the flames can cause major flare-ups.
  • Keep a spray bottle of water handy. Use it to douse small flare-ups before they get out of control. The bonus? Water won’t ruin the food.
  • Never leave your grill unattended. And remember that charcoal grills can stay hot for hours after use.
  • If your flame dies down, add dry kindling. Never add lighter fluid once the flame has been lit.

When using a gas grill

  • Make sure the lid is open before lighting it. This prevents flammable gas from being trapped in the chamber, which can cause an explosion.
  • If you smell gas and the flame is off, turn the gas off.
  • If you smell gas while using a gas grill and the flame is on, get away immediately. This is a sign that there is a leak. Call the fire department, and stay away from the grill.

Next steps:

Family teams with UK’s Dr. James Liau to raise awareness of cleft care

The 20-week ultrasound appointment allows expectant parents to get a sneak-peek of their baby growing inside the womb.

First-time parents Anna and Evan Ciannello went into their 20-week appointment expecting to see their baby’s physical features taking perfect form. Instead, the scan brought unwelcome news.

During the scan, the ultrasound technician noticed a separation of tissue at the baby’s upper lip. The visual was enough for doctors to diagnose the Ciannellos’ baby with a cleft lip and palate, which are birth defects of the lip and roof of the mouth that form early in infant development. Cleft lips and palates are the most common birth defects in the United States, occurring at a rate of about two in 1,000 births. More than 4,000 American babies are born with a cleft lip each year. In most cases, the defect is repaired early in a child’s life and they are able to live a normal and healthy life.

The diagnosis terrified Anna, who didn’t know where to turn for information about treatment and outcomes for babies with a cleft lip and palate. Because cleft lips are stigmatized in many cultures, including in American society, families remain silent about their child’s diagnosis, leaving other parents in the dark about how to respond to the diagnosis. The absence of a supportive local cleft care community was frightening for Anna.

“We were devastated when we learned the news,” she said of the diagnosis. “I went into panic mode; I thought I had done something wrong. I was very sad and overwhelmed.”

Looking for answers

Anna searched the internet for information about cleft lips and palates, which only intensified her uncertainty and fears. Through a husband’s friend, she connected with another mom in New Jersey whose child was born with a cleft lip and palate. This mom encouraged her to relocate to Philadelphia for corrective surgeries. Hoping to stay close to family in Kentucky, the couple started calling plastic surgeons at major pediatric centers around the region. Anna said every surgeon on the list referred her to Kentucky Children’s Hospital pediatric plastic craniofacial surgeon Dr. James Liau.

Liau is an outspoken advocate for families seeking cleft care in the region, as well as around the world. Liau met with the Ciannello family before the baby’s delivery to explain the initial diagnosis and options for treatment, assuring them that with early surgical intervention, he could make the cleft lip and palate virtually disappear.

“It was exactly what we needed to hear,” Anna said. “I started getting more confidence, and I felt good about the decision.”

Beginning Frankie’s journey

Francis, or “Frankie,” Ciannello was born in January 2016. On the night Frankie was born, Liau visited the family in their hospital room and conducted an assessment of Frankie’s cleft lip and palate. He believed Frankie’s case was manageable with a series of surgeries, and the first surgery to correct the cleft lip and repair his nose was scheduled for when Frankie was 6 months old. A second follow-up surgery to correct the palate was scheduled six months later. Frankie will have his next surgery when he is a little older so he gets a break for a few years.

Anna’s anxiety about her son’s appearance dissipated when she finally met him face-to-face. She realized Frankie’s appearance was not alarming or embarrassing, and his condition wasn’t a crisis, but an opportunity to challenge the ideal of “the perfect baby.” Frankie, an endearing and handsome baby, was perfect with his cleft lip.

When Anna took her baby to the thoroughbred sales at Fasig-Tipton, co-workers, clients and members of the equine community all embraced Frankie’s appearance. Frankie traveled with his parents to nine racetracks across the country before his first birthday, and Anna said no one ever stared or acted rude to her baby. Most people complimented his precious smile and happy demeanor. Everyone was drawn to him.

“They said he should be a little model,” she said. “I was so proud of how he looked.”

In fact, when Frankie was admitted for his first surgery in June 2016, Anna knew they would miss his distinctive lip and wide smile. The family had grown accustomed to the cleft lip; it was an important part of Frankie’s journey. Instead of shielding her son from the world, Anna decided to share Frankie’s story on social media in hopes of offering comfort and guidance for families processing the prenatal diagnosis cleft lip or palate. She posted photos of Frankie before and after his surgery and provided updates on his surgeries on a Facebook page. The outpouring of support was overwhelming. People called her and told her how they have loved following Frankie’s story and how it brings them to tears to see the photos and read about him.

“I just treated him like a normal baby,” Anna said. “I always wanted him to know I wasn’t embarrassed by him. I am so proud of him.”

Helping parents on their own journey

Anna now consults with parents who come to Liau with a prenatal cleft lip or palate diagnosis. She guides them through some of the complications related to the baby’s care, such as where to access special bottles for cleft babies, how to make adjustments for breastfeeding or what to expect after each surgery. Most importantly, she wants parents to feel confident and excited about the birth of a beautiful baby who might not conform to societal standards. She and Liau are working together to create a network of cleft care families to support one another in the local community and reduce the stigma of cleft palates.

“I see a baby with a cleft, and I have this instant love for them,” she said. “I have such a soft spot for these babies. They are so strong and have to go through so much at a young age.”

Recently, Anna saw a couple with a baby who had a cleft lip out in the community. She approached the couple to admire their baby, telling them their baby was very cute.

“They had so many questions for me. I remember the mother saying, ‘I think God sent you to us.’ It is an emotional thing, but I know what they are going through.”

In addition to supporting local families, the Ciannellos organized “Frankie’s Fund” to support Liau’s mission work abroad. Using his vacation time, Liau takes two mission trips a year to Ecuador and Guatemala to repair cleft palates and lips in third-world communities that lack medical resources. In September, Liau travels to Ecuador to volunteer as a surgeon for the Global Smiles medical mission. During these 10-day visits, hundreds of parents line up with children for evaluation, and surgeons accept about 40 of the most drastic cases for surgical repair. In the winter, Liau volunteers on a Children of the Americas mission trip, performing four to five surgeries a day on children in need of corrective surgery. Each trip, with the medical costs for the surgeries, adds up to about $75,000.

While a cleft diagnosis isn’t necessarily life threatening to a person in the United States, if left untreated the conditions can lead to life-long impediments for people in third-world countries. The stigma is more severe for someone living in Central America, and individuals with cleft palates are ostracized for the condition. Clefts also can cause speech defects, eating issues and severe infections that can lead to deafness. Liau believes he has an obligation to take his surgical skills to pockets of the world where surgical care is not easily accessible to children.

“We offer a lot of services to Kentucky, but in the same regard we have the ability to take it further to these other countries where they have no option,” Liau said. “There is no safety net for them.”

It’s more than medicine

The Ciannellos are grateful for the care they receive from Liau, who has become a friend and outreach partner in addition to being their son’s surgeon. “We can’t stress enough that not only is Dr. Liau an amazing surgeon, but he is also a wonderful person. He has such a kind and gentle way with children, and he always knows how to calm us nervous parents down during the entire process.”

Anna didn’t want to lose the image of how her baby looked with his cleft lip, so she has lots of photos as reminders. Another reminder is the subtle scar on Frankie’s upper lip, an edgy trademark that sets him apart from other toddlers.

“I always tell my husband, ‘Don’t you love how he’s a little different?’” Anna said of the scar.

Last year, Frankie’s Fund raised more than $15,000 to support Liau’s work in Ecuador. Click to give to Frankie’s Fund.

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Next steps:

Fireworks safety tips from UK HealthCare

Got fireworks? Keep your Fourth fun, safe with these tips

Thousands of children and adolescents in the United States are injured in firework-related accidents every year during fireworks season, which starts now and runs through the middle of July.

In fact, in 2015, more than 3,000 children and young adults under the age of 20 in the United States were taken to emergency rooms with injuries related to fireworks.

Before you and your family head outside to enjoy the Fourth of July and other summer festivities, check out our tips for staying safe around fireworks.

  • Leave it to the professionals. Instead of setting off fireworks at home, attend a public fireworks display. You’ll be out of harm’s way and still be able to enjoy the show.
  • If you are using fireworks at home, take precautions. Never let children play with or light fireworks, and always read all warning labels before use.
  • Do not wear loose clothing while using fireworks. And be sure to stand several feet away from lit fireworks.
  • Have an extinguisher nearby. A bucket of water, hose or fire extinguisher will work.
  • Don’t try to relight a firework that hasn’t worked properly. Instead, put it out with water and get rid of it.
  • Be careful with sparklers. Sparklers heat up to more than 1,000 degrees Fahrenheit and present a real health risk, especially for small children. Instead of sparklers, let your little ones use glow sticks – they’ll have fun and stay safe, too.
  • Be prepared for an emergency. Have a phone nearby in case you need to call 911, and teach children what to do if their clothing catches fire (stop, drop and roll). In the case of an eye injury, avoid touching or rubbing it, which can make the injury worse, and get help immediately.

Next steps:

Daniell Pruitt always wanted to ride a bike, but because of her spinal muscular atrophy, she never could. But UK HealthCare helped make her dream come true.

UK students make adapted bicycle a reality for disabled teenager

Danielle Pruitt is a pretty typical teenager. The chatty 13-year-old loves social media, hanging out with her friends and going to school (most days). Much to her parents’ chagrin, she often introduces herself with a drawn-out greeting of, “’Sup?”

Danielle cannot move her limbs or sit up. She has spinal muscular atrophy, a genetic disorder that affects the part of the nervous system responsible for controlling voluntary muscle movement. She is not able to do many things others take for granted. For the longest time one of those things was riding a bike.

Danielle’s mother, Beth, recounts previous attempts to give this experience to her daughter. She mentions a bike with a car-seat lying flat and attached to the handlebar. But this was not what Danielle was looking for, Beth said.

“There are so many things we want to do for her, and it’s frustrating to not be able to problem solve,” Beth Pruitt said. “She wanted a real bike.”

Promoting independence

In April 2016, Catherine Gohrband, a lecturer in the UK College of Health Sciences’ Division of Physical Therapy, helped a group of physical therapy students found a local chapter of AMBUCS, a national nonprofit organization that provides therapeutic tricycles to individuals unable to operate a traditional bike.

“There has been wonderful community and university support for both the chapter and the students involved with this project,” Gohrband says. “This organization has a mission to promote independence to persons with disabilities and provide children with disabilities the opportunity to pursue family recreation and leisure experiences through the use of these adapted bicycles.”

In August 2016, AMBUCS brought several bikes – called Amtrykes – to the Child Development Center of the Bluegrass for children to try out. Amtrykes can be adapted so that nearly every rider can be successful, no matter their physical condition. Danielle’s physical therapist Joanne Luciano, clinical director at On the Move Pediatric Therapy, recommended the event to the family, where Danielle rode an Amtryke for the first time. Her mother remembers the look on Danielle’s face. “It was phenomenal,” she said.

The family was not able to take a bike home that day, but they made an impression on Gohrband and her students.

Making dreams come true

Soon after the AMBUCS event, the CHS (College of Health Sciences) Staff Council was considering who might be the beneficiary of its annual Harvest Breakfast and Silent Auction.

“We wanted our fundraising efforts to go toward people and causes that were close to CHS,” Melissa Miller, CHS staff council chair, said. “After Catherine told us about Danielle, we made it our mission to get her a bike.”

Thanks to the hard work of Staff Council and the generosity of CHS faculty and staff, the silent auction was a success. The proceeds were enough to purchase not one, but two Amtryke bikes.

“We are all beyond thrilled that we got to make Danielle’s dream come true,” Miller said. “AMBUCS created an opportunity that we didn’t even know could exist for her, and it was a privilege to be part of it.”

To her parents’ delight, Danielle’s wish was granted. It takes her parents and therapist about 10 minutes to situate her comfortably on her bike, with various straps and harnesses meant to hold her securely and still allow for therapeutic movement.

“Can you take my picture on my bike like this?” Danielle asked, as she rolled her eyes toward the top of her head. “Because it shows my personality.”

Then Danielle speeds away, very much like a typical kid.

Flanked by her parents, Danielle Pruitt tries out her new Amtryke.

Flanked by her parents, Danielle Pruitt tries out her new Amtryke.


Next steps:

drowning

Drowning isn’t obvious. Here’s how to spot someone in trouble.

Many of us assume we know what it looks like when a person is drowning: Waving hands, splashing water and shouts for help.

Unfortunately, drowning isn’t nearly that obvious. One of the most alarming things about drowning is that unlike its depiction in Hollywood, it’s a deceptively quiet event.

Every day in the U.S., about 10 people die from drowning. Among children 15 and under, it is the No. 2 leading cause of deaths (just behind car accidents). And for every child who dies from drowning, there are five others who require emergency room care or hospitalization.

Although it may be difficult to identify someone who is drowning, there are common behaviors that might indicate something is wrong. The behaviors are known as the instinctive drowning response. That term was coined by Francesco A. Pia, PhD, a lifeguard and internationally recognized expert in drowning prevention. Here’s what Pia says a drowning person might look like:

  1. They’re quiet. Struggling to breathe makes it almost impossible to call for help. They may also be bobbing up and down as their mouth goes above and below the water line.
  2. They won’t be waving for help. In fact, the body’s natural response is to extend the arms laterally, allowing the person to push down and lift their head above water.
  3. They’ll be upright in the water. People who are drowning will not kick their legs and will appear relatively still. Their bodies will appear to be straight up and down in the water.

When a person is drowning, they’ll only be above water for between 20-60 seconds total. That’s why recognizing the more subtle signs of someone in distress can mean the difference between life and death.


Next steps:

water safety tips

8 tips to keep kids safe around water

Before you head to the pool or lake this summer, be sure safety is on your mind, especially when children are around.

Among children age 15 and under, drowning is the No. 2 leading cause of death. Whenever children are near water, follow these safety rules:

1. Be aware of small bodies of water

This includes bathtubs, fishponds, ditches, fountains, watering cans – even the bucket you use when you wash the car. Children are drawn to things like these and need constant supervision to be sure they don’t fall in. Make sure you empty containers of water when you’re done using them.

2. Keep a watchful eye

Children who are swimming – even in a shallow toddler’s pool – should always be watched by an adult, preferably one who knows CPR. Be within arm’s length, providing “touch supervision” whenever infants, toddlers or young children are in or around water. Empty and put away inflatable pools after each play session.

3. Enforce safety rules

No running near the pool and no pushing others underwater.

4. Don’t forget life jackets

A life jacket fits properly if you can’t lift it over a child’s head after it’s been fastened. For children younger than 5, particularly non-swimmers, life jackets should have a flotation collar to keep the head upright and the face out of the water.

Don’t allow your child to use inflatable toys or mattresses in place of a life jacket. These toys may deflate suddenly, or your child may slip off into water that is too deep.

5. Safety in the backyard

Backyard swimming pools (including large, inflatable above-ground pools) should be completely surrounded by a fence that keeps children out without adult supervision. Keep toys out of the pool area when not in use so children are not tempted to enter without supervision.

If your pool has a cover, remove it completely before children go swimming. Also, never allow children to walk on the pool cover.

6. Avoid hot tubs

Spas and hot tubs are dangerous for young children, who can easily drown or become overheated in them.

7. Adults, stay away from alcohol

Don’t drink alcohol when you are swimming or supervising. It presents a danger for you as well as for any children you might be supervising.

8. Eliminate distractions

Talking on the phone, working on the computer and other tasks need to wait until children are out of the water.


Next steps:

  • When someone is drowning, it often goes unnoticed. No splashing. No waving. No yelling for help. Visit the blog tomorrow to find out how you can identify someone who’s drowning and what you can do to help.
  • Before you head outside to enjoy the summertime sunshine, be sure to protect your eyes with tips from our eye care expert. 
New Lexington Shriners facility

New Shriners facility enhances patient care, strengthens collaboration with UK

On Sunday, patients, medical center staff and doctors, donors, and UK HealthCare leaders came together to dedicate the new Shriners Hospitals for Children Medical Center Lexington facility, which opened earlier this spring on the UK HealthCare campus.

While healthcare providers at Shriners Medical Center and Kentucky Children’s Hospital have collaborated for decades, the opening of the new facility will better accommodate follow-up appointments for patients seeing multiple doctors for complex medical conditions.

“Shriners Medical Center moving to the UK HealthCare campus allows for seamless care to occur across institutional boundaries,” said Dr. Ryan Muchow, a pediatric orthopaedic surgeon at Shriners and UK HealthCare. “The patients are benefited tremendously when two excellent institutions combine mission and service to advance the pediatric orthopaedic care.”

Continuity of care

When the new facility opened earlier this year, patients like Zayleigh Hancock were the first to benefit.

Zayleigh, a longtime patient at Shriners, was born with a complex medical condition called hemiplegia cerebral palsy (CP), a brain impairment that impacts a person’s ability to control movement and posture. Traveling to Lexington from her hometown of Morristown, Tenn., the 10-year-old has received ongoing treatment and numerous surgical interventions at both Shriners and KCH to improve her mobility and quality of life.

Earlier this year, Zayleigh’s head started slumping to the side, a symptom caused by overlapping bones in her neck. The condition required an inpatient surgical procedure at KCH and follow-up care and assessment at Shriners.

This close connection between KCH and Shriners, which is now connected by a pedestrian bridge to UK Albert B. Chandler Hospital and KCH, enabled seamless inpatient treatment and post-surgical care for Zayleigh. In addition, Zayleigh benefited from continuity of care, seeing familiar orthopaedic surgeons who have monitored her condition for years while also having access to advanced pediatric specialists at KCH.

A history of collaboration

Shriners has operated in Lexington since 1926. Transitioning from its former location on Richmond Road, Shriners now occupies 60,000 square feet of space on the bottom three floors of the new building on South Limestone. UK HealthCare leases the top two floors for ophthalmology services. The new Shriners includes a motion analysis center, 20 patient exam rooms, two surgical suites, a rehabilitation gymnasium, a prosthetics and orthotics department, therapy rooms, and interactive artwork. The energy-efficient building has geothermal heating and cooling, LED lighting and occupancy sensors, and automated equipment and controls.

UK HealthCare and Shriners have forged a longstanding collaborative relationship through years of service to Kentucky’s children. Pediatric specialists in the fields of orthopaedics, anesthesiology and rehabilitation serve on the medical staff of both organizations.

Mark D. Birdwhistell, vice president for administration and external affairs at UK HealthCare, called the new facility a win for UK, Shriners and the Lexington community.

“The building we are dedicating today will allow us to collaborate in a whole new way,” Birdwhistell said during the dedication, “bringing together Shriners Medical Center’s pediatric orthopaedic expertise and the Kentucky Children’s Hospital’s specialty and subspecialty care for children with complex conditions.”

Watch the video below to hear Dr. Henry Iwinksi, the chief of staff at Shriners and pediatric surgeon at UK HealthCare, discuss the longstanding relationship between Shriners and UK and what the new facility will mean for kids and families in the Commonwealth.


Next steps:

  • Learn more about the pediatric orthopaedic care provided by the experts at KCH and Shriners.
  • When your child is sick or hurt, you want the best care possible. That’s exactly what you get at Kentucky Children’s Hospital. Learn more about KCH.
Two doctors at UK HealthCare decided to study aromatherapy's positive healing effects on at-risk infants in the NICU. Early results have been encouraging.

UK neonatal physicians use aromatherapy to soothe newborns

Pulling away the seal of a fresh aromatherapy patch, Dr. John Daniel took a deep inhalation as the fragrance of lavender and chamomile essential oils permeated his surroundings.

Daniel was ending an overnight shift in the neonatal intensive care unit (NICU), and one waft of lavender was enough to calm his senses and induce a state of relaxation. While popular with pediatric residents, fellows and nurses in the NICU, the aromatherapy patches are also being used to soothe and mitigate stress of the hospital’s smallest and most agitated patients – babies suffering from drug withdrawal.

Demonstrating how babies receive aromatherapy as part of their medical treatment, Daniel applied a thumbnail-size patch to the “palm” of a floppy green pillow called a Zaky arm. The Zaky arms, which mimic the feeling and shape of a caregiver’s arm, carry both the scent of the baby’s mother and calming aromatherapy oils. He then placed the lavender-scented pillow alongside a baby dozing off in a NICU bed.

Studying the effects of aromatherapy

Herbalists, chemists and massage therapists have long promoted the therapeutic and healing properties of essential oils. Lavender oil, which produces the mood-balancing serotonin chemical in the brain, triggers sedative states and relaxation while chamomile oil balances out emotions. Dr. Lori Shook, a neonatologist in the NICU, wondered if the oils could help mitigate disease-related stress and anxiety in NICU babies.

Shook was familiar with veterinarians’ use of lavender to calm skittish animals and, as a horse owner, had seen spooked horses respond to lavender. Knowing many of her infant patients were inundated with drugs in the early days of their lives, she wanted to integrate more non-pharmaceutical therapies to treat babies experiencing stress and medical complications related to withdrawal from drug exposure in the womb, or neonatal abstinence syndrome (NAS).

Few scientific studies have produced evidence showing an association between aromatherapy exposure and improved health outcomes. Shook and Daniel, a pediatric fellow, set out to examine the potential to use aromatherapy to reduce stress in agitated infants.

“There is a lot of complementary alternative medicine research out there that is not subjected to rigorous scientific methodology,” Daniel said. “When we started this project, that was our goal.”

Shook and Daniel recently completed a pilot study reporting positive results from administering aromatherapy as an adjunctive treatment for babies recovering from NAS. Since launching recruitment in fall 2015, Shook and Daniel have enrolled 40 infants admitted to the NICU with symptoms of NAS. Infants assigned to the experimental condition received an aromatherapy patch, in addition to other necessary medical interventions to facilitate recovery. The preliminary results show babies who received aromatherapy stayed in the NICU an average of 6.4 fewer days than babies who did not receive the aromatherapy treatment. The researchers found babies who received aromatherapy needed smaller doses of withdrawal maintenance medication than those who didn’t receive aromatherapy.

Shortening an NAS infant’s length of stay in the NICU helps families, but also reduces medical costs. One day of treatment in the NICU nursery costs about $5,000 for one baby. The study suggests that aromatherapy patches, at about $2 apiece, can be implemented cost-effect measure for reducing drawn-out hospital admission for NAS treatment.

“The cost of caring for these babies is astronomical,” Shook said. “Being able to shorten their stay is a financial and social windfall for everybody.”

Another tool in the medical “toolbox”

Shook considers aromatherapy another element in a comprehensive medical “toolbox” to facilitate recovery in babies experiencing stress from NAS or other medical complications at birth. Doses of methadone and morphine are the standard pharmaceuticals for babies experiencing withdrawal. But Shook and NICU providers avoid medications as a first-line treatment, trying multiple interventions and natural therapies before prescribing maintenance medication.

“It’s easy to throw drugs at these babies. The traditional approach is a dark, quiet room and swaddling, and if that doesn’t work then you use morphine,” Daniel said. “We would prefer to not use drugs. Once they get started, it’s a long haul sometimes.”

Shook has integrated multiple non-pharmaceutical therapies and practices, such as shushing, meditation, energy flow, music therapy, occupational therapy, skin-to-skin bonding and infant massage, to decrease stress and promote recovery in NAS babies at Kentucky Children’s Hospital. Parents and families receive instruction on how to perform stress-reducing practices to soothe babies at home. Shook references both scientific and anecdotal evidence from working with new mothers to support the effectiveness of adjunctive therapies for distressed babies. She only introduces medication after many non-pharmaceutical alternatives are ruled ineffective in reducing infant stress.

Exploring more possibilities for aromatherapy

Shook has proposed another study to explore whether aromatherapy alleviates stress and increases sleep hours in NICU nurses. She is also working to extend the study of aromatherapy in babies to multiple sites across Kentucky and rural satellite nurseries receiving NAS babies. Ideally, babies showing symptoms of untreated drug exposure will receive aromatherapy before the onset of withdrawal. Many babies admitted to the KCH NICU are transferred from smaller rural hospitals and already experiencing withdrawal.

Shook also thinks future research must identity the specific processes in the brain stimulated by aromatherapy, contributing to scientific evidence in favor of using aroma as a clinical therapy. Aromatherapy could be used in numerous pediatric settings to help calm children undergoing treatment. Shook would like to see the medical community embracing alternative therapies and natural remedies rather than relying only on medication to heal patients.

“There is so much opportunity here,” Shook said of researching alternative therapies. “There is a reason these things exist in folklore, and it’s because they work.”


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Gilson Capilouto, PhD, along with Tommy Cunningham, PhD, created a device that can measure and improve neonatal feeding, which some infants struggle with.

First-of-its-kind infant feeding device gets its start at UK

Since the early days of her career, Gilson Capilouto, PhD, has been interested in pediatric feeding, but it wasn’t until she joined the UK’s multidisciplinary team in the Neonatal Intensive Care Unit (NICU) that she became especially interested in feeding challenges for children who are born early or with illnesses. Around 15 million babies are born prematurely in the U.S. each year, and up to 70 percent of them, as well as about 10 percent of full-term babies, experience difficultly transitioning to oral feeding.

“My interest in neonatal feeding began in earnest when I came to UK 15 years ago. It seemed a natural extension of the work I was doing as part of the UK NICU multidisciplinary team, following high-risk infants after they’re discharged from the hospital,” Capilouto said.

Feeding is important for a baby’s nutrition, of course, but it also has implications for long-term development and eating. Neonatal sucking is considered the most complex behavior of a newborn. Research suggests that infant sucking may provide an early window into the overall integrity of the central nervous system, possibly predicting long-term neurodevelopmental outcomes. Studies have shown that early sucking correlates with overall development at six months, one year and two years. Infant feeding problems can also spill over into eating difficulties with solid food, especially in cases where feeding might have been an unpleasant experience during infancy, and can cause great distress for caregivers.

Skip ahead a few years, and Gilson and her business partner Tommy Cunningham, PhD, now run an award-winning company, NFANT Labs, LLC, based on a device they developed to measure the strength and coordination of an infant’s ability to suck. The device, called the nfant Feeding Solution, is essentially a “smart” baby bottle that uses low-energy Bluetooth technology and a mobile app to provide immediately actionable information about what’s going on with an infant’s feeding. It displays the impact of feeding interventions in real time, tracks and charts infant progress, and creates a continuity of care among caregivers. It’s also the first “internet of things” medical device cleared by the Food and Drug Administration for use in the NICU. (You can see the device here.)

UK’s multidisciplinary NICU initiates research

This journey began as a simple research question that came to Capilouto during a continuing education conference focused on feeding preterm and sick term infants in the NICU.

“This whole thing started when I was attending a conference and the speaker was talking about the fact that for adults who aren’t orally fed for a while, their tongue muscle atrophies in a short period of time,” Capilouto said. “But we didn’t know if this was true in pre-term babies, who could go many weeks before they’re ever allowed to feed orally, sometime around 32-34 weeks gestation. So if baby is born at 28 weeks, for example, it will be many weeks before they can start to use their tongue muscle.”

When she got back to UK, Capilouto assembled a multidisciplinary team that could undertake the task of trying to measure infant sucking. The group included an expert in muscle biomechanics (Dr. Tim Butterfield also in the UK CHS), a muscle biologist, a clinical radiologist, and Cunningham, who at that time was at UK as a PhD student in biomechanics. An inventor with a couple patents under his belt, he’d also started a small engineering firm to help clinicians develop the tools they needed to conduct their research. His particular focus was, and remains, using evidence-based medicine to inform product development.

“Gilson came to me and Dr. Butterfield and said, ‘I need a bottle that can measure the strength of a baby’s tongue.’ She specifically wanted to be able to measure tongue strength during actual bottle feeding. Dr. Butterfield and I were intrigued by the challenge and after a couple of months, we had a proof-of-concept device.”

With a grant from the Kentucky Science and Engineering Foundation in 2011, they developed and tested the device, hypothesizing that both tongue force and tongue size would be different between preterm infants beginning to orally feed and full term infants. Results of that first study provided support for their hypothesis, as pre-term infant tongue force was found to be significantly less than full-term infants relative to nutritive sucking; interestingly, simple pacifier sucking strength was not different between the two groups.

“When we got those results, we were pretty excited, we knew we wanted to continue this line of research, but we needed instrumentation that was more NICU-friendly. Ultimately we saw the clinical utility of what we were doing, so we wanted to build an instrument not just for research purposes, but also a tool that could be used in clinical practice at the bedside,” Capilouto said. “We knew we were on to something, but the methods were cumbersome – it required a bank of computers and four people to collect the data, and we knew for the long term that would not be feasible.”

Following release of the Intellectual Property from the University, Capilouto and Cunningham sought further funding from the Office of Research in the UK College of Health Sciences in 2012 to help them develop a second prototype that could be used bedside in the NICU.

“We leveraged a lot of technologies out there, like what’s in your cell phone, and built it on a scale to fit around a baby bottle so it could be easily incorporated to bedside work flow. We also wanted the final device to be easy to use and low cost. Millions of cell phones are made, so that drives down prices of the components,” Cunningham said.

Testing the second prototype provided the necessary confirmation for the new design and also provided important feedback about desirable features and characteristics from NICU bedside nurses. Armed with this information, Cunningham, who had moved to Atlanta after he finished his PhD at UK, left his job to devote himself full-time to development of the device. After rapid prototyping and validating the final device, Capilouto and Cunningham founded NFANT Labs, LLC, based in Atlanta, in 2013. The company has two patents and a third one pending.

In the fall of 2015, the nfant Feeding Solution device was cleared by the FDA and that following January, Capilouto took a one-year, university-approved entrepreneurial leave of absence and relocated to Atlanta to work with the company. During this time, they were able to introduce the product in NICUs around the country and establish partnerships for conducting clinical trials. The company also developed, tested and launched a second product — a line of high quality silicone bottle nipples.

UK offers its support

Currently, a novel methodology award from the UK Center for Clinical and Translational Science and the UK College of Health Sciences supports a research study to determine if the measures of sucking performance from the nfant Feeding Solution can be used to identify infants who are most likely to experience ongoing feeding problems after discharge. Dr. Peter Giannone, chief of the division of neonatology at UK, serves as co-investigator on the grant.

The study is following preterm infants at high risk for developmental concerns from hospital discharge through their first year. For those babies whose one-year developmental testing reveals cognitive or motor issues, the team will go back to data from their early feeding behaviors in the hospital in the hopes of identifying sucking performance variables that could possibly have predictive power.

“We want to identify babies who we are at risk for poor developmental outcomes as early as possible, so we can get them the help they need as soon as possible and take advantage of the mechanisms of neuroplasticity.” Capilouto said.

NFANT Labs has earned several accolades for its pioneering work. In March of this year, the Technology Association of Georgia, the state’s leading association dedicated to the promotion and economic advancement of Georgia’s technology industry, named nfant Feeding Solution as the Breakthrough Technology of the Year and NFANT Labs one of its Top 10 Innovative Technology Companies in the state. Last year, NFANT Labs was named a Silicon Labs “Internet of Things Hero” and also received Georgia Bio’s coveted Innovation Award. In 2015, the company received the E-Achiever Award from the Lexington Venture Group.

With this strong foundation, NFANT Labs is experiencing rapid growth. To date, they have raised $3.5 million of private capital and are gearing up to raise another $5 million to expand their sales force, create additional products and take the company to the next level. The device is being used in NICUs across the country to assist healthcare teams in clinical decision making regarding a fragile infant’s transition to oral feeding. UK is currently in the process of purchasing and integrating it into their standard of care. It is also being used in several of the top children’s hospitals in the country to study important research questions, including the relationship between early sucking performance and neonatal brain injury.

Capilouto and Cunningham both emphasize the necessity of a team that takes advantage of multiple fields of expertise.

“To get us to this point, we assembled a distinctive interdisciplinary research team consisting of basic, translational and clinical investigators with expertise in pediatric feeding and swallowing, muscle physiology, muscle biomechanics, biomedical engineering, diagnostic radiology and neonatology,” Capilouto said.

Cunningham added that “the idea is just one thing. You need clinical research, executive leadership, capital backing, sales and marketing, manufacturing, etc. It takes a vast amount of resources to go from an idea to a sustainable business focused on improving patient care.”

As their company grows, the team hopes to broaden the use of the nfant Feeding System to learn more about feeding behaviors and neurodevelopment of specific groups of infants, as well as extend their capacity to support caregivers.


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