Mom recalls relief after daughter began therapy at Akron Children’s 36 years ago

Claudia and Frances Anger in EnglandIt may have happened 36 years ago, but Frances Anger still remembers the devastation she felt upon learning her 6-month-old daughter had cerebral palsy.

It didn’t help the new mom-to-be when she was told her baby would likely never walk, talk or feed herself. Frances, resolute in her refusal to give up on baby Claudia, followed the advice of a friend and looked into the infant therapy services offered at Akron Children’s Hospital.

“We needed lots of help,” said Frances. “All the things most parents take for granted we had to work very hard for. The therapists gave me lots of encouragement and ideas for what I could do to help Claudia improve.”

Some of those ideas included learning how to do therapeutic exercises at home to help Claudia progress faster, and buying toys that would reinforce therapy goals such as dolls that needed their shoelaces tied.

“Those first few years were so important to Claudia’s development,” she said. “I don’t think we owned a single toy that didn’t have a dual therapy purpose.”

Frances and her husband looked forward to Claudia’s weekly therapy sessions because during that same time they participated in a parent support group with other parents of children with cerebral palsy.

“It was so helpful to learn tips from other parents who were going through the same things we were. It helped to know we weren’t alone,” she said. “We would share the names of physicians we liked, where to buy therapeutic toys or adaptive equipment, and where to go for support services in the community.”

ClaudiaFrances said it’s always been her goal to not treat Claudia as disabled.

“She could pretty much do everything any other kid could do with a few exceptions – it just took her a little longer to get there.”

Now 36 years old and living independently, Claudia long ago proved her initial naysayers wrong. She ran track for North High School, swam on a Special Olympics swim team for 17 years, and has held down various jobs at Walmart, Goodwill and Hattie Larlham since graduating from high school in 1998.

“Even though she’s nonverbal, she has made a life for herself,” said Frances. “She has an iPad-like device that speaks what she types so she is able to communicate.”

Frances feels strongly that things could have been very different had she not found Akron Children’s when she did.

“Those first couple years were so important to Claudia’s development,” she said. “I don’t know where we’d be today if we didn’t have the infant therapy team to start us off on the right foot.”

As part of our year-long anniversary celebration, we’re telling the story of Akron Children’s through the eyes of past and present employees, doctors, donors, volunteers and patient families. We encourage you to share your own memories and stories about us.

kmckjohnson@hotmail.com'

About Kathy Johnson

Kathy Johnson is a freelance writer, editor and public relations consultant with nearly 25 years of experience in the healthcare industry.

Unconditional love Retired nurse reflects on decision to adopt babies with spina bifida

Wilson family portrait

Nelda Wilson has always loved babies. As a nursing student in the 1950s, one of her favorite jobs was working as a student feeder at Akron Children’s Hospital.

“I was in nursing school at Akron General and we would walk over and spend 2 hours feeding the babies in the evenings,” she said. “I always gravitated towards the babies with spina bifida (a neural tube defect which leaves the spinal cord exposed outside the body), but the nurses would tell me not to get attached because most of them didn’t survive. At that time there were no surgical options to close their spines and most of them died from infections.”

After being hired at Akron Children’s in 1961, Wilson continued to ignore the advice of fellow nurses and showered extra love and affection on the babies with spina bifida.

“They deserved to be loved just like all the other babies,” she said.

After reading an article in a magazine about an unmarried nurse in Pennsylvania who had adopted a blind baby, Wilson started to consider whether she could do the same for a baby with spina bifida.

In 1969 the opportunity presented itself when 10-day-old Patrick Clifford was transferred to Akron Children’s so Dr. Clifford Boeckman could perform a relatively new spinal closure surgery on him.

Slated to go to the Hattie Larlham Center for Children with Disabilities after his surgery, Wilson felt compelled to save him from a life void of maternal love.

“He was so feisty,” Wilson said. “It was already a miracle he had survived 10 days. I just knew I had to try and adopt him.”

Patrick.

Patrick

At the time, Wilson became the first single person in Summit County to adopt a child – paving the way for many others to follow in her footsteps.

She and Patrick made an unlikely family that defied modern day conventions of what families looked like.

That didn’t mean there weren’t some hurdles to overcome.

“When his first orthopedic doctor refused to brace him or allow for physical therapy until he was 5, I found another doctor,” Wilson said.

Wilson had a lot of things working in her favor including a father who built Patrick a standing board and a set of parallel bars for him to practice standing and walking at 13 months old.

Patrick went to preschool on a farm where he rode horses and played with animals – things even most typical kids don’t get the chance to do in preschool.

And what kid – typical or not – gets to sample the favorite homemade cookie of the sitting United States president?

“I took Patrick to the White House for a tour,” said Wilson. “It just so happened that the handicapped elevator came out in the White House kitchen. At the time they were baking President Ford’s favorite cookies and they gave us some to sample and take home.”

Wanting to expand her family for a number of years, Wilson learned of a girl with spina bifida who was living at Hattie Larlham. When she became available to adopt, Wilson jumped at the chance.

“Sarah was 3 ½ when she joined our family and she had many more medical problems than Patrick,” said Wilson. “But I was determined to give her as normal a life as I did her brother.”

Sarah's first day at Holy Family.

Sarah’s first day at Holy Family

Wilson believed her job as a mom was a natural extension of her job as a nurse.

“If I was going to intervene and save these children from a life of neglect, I was also going to try and give them the highest quality life I could,” she said.

Wilson’s push to always have her son and daughter treated normally has yielded 2 independent adults who now live in their own places, have jobs and hobbies that keep them busy.

Patrick, now 46, can be found on the amateur theater scene around town acting and auditioning, and 43-year-old Sarah has worked for Coleman Data Solutions as a data entry operator for 22 years.

In 1999, after 38 years of service to Akron Children’s, Wilson was forced to retire for health reasons. She volunteers at church and even keeps in touch with a former patient who helps her out around the house.

“I could never imagine working anywhere else,” Wilson said. “I loved the people at Akron Children’s and still go back annually for the retiree luncheon and the Holiday Tree Festival. It is the best place on Earth for children and their families.”

As part of our year-long anniversary celebration, we’re telling the story of Akron Children’s through the eyes of past and present employees, doctors, donors, volunteers and patient families. We encourage you to share your own memories and stories about us.

kmckjohnson@hotmail.com'

About Kathy Johnson

Kathy Johnson is a freelance writer, editor and public relations consultant with nearly 25 years of experience in the healthcare industry.

Forward looking Pediatric radiologist marvels at advances in imaging

From the get-go, Dr. Godfrey Gaisie knew he wanted to practice medicine at Akron Children’s.

It was obvious from his interview that the environment, staff and physicians all worked in sync toward a common cause: taking care of sick children no matter what the family’s financial situation.

And if that weren’t enough, the hospital’s mission reassured the pediatric radiologist; it’s a commitment that aligns closely with his beliefs.

PAC chalks up 20 years of improving family-centered care

PAC the Park
NOTE: Scroll to the bottom to view the photo gallery. Click on the image to enlarge.

The PAC the Park event last week offered an artistic way to mark the 20th anniversary of Akron Children’s Parent Advisory Council.

About 300 patient families and staff members could be seen strolling along the walk ways in Perkins Park to see and create sidewalk art in honor of PAC.

PAC the ParkOur PAC, one of the oldest parent advisory boards in the country, is made up of 2 councils of parent volunteers for the hospital’s Akron and Boardman locations. The group advises Akron Children’s on how it can more effectively meet the needs of children and their families.

They provide input on everything from the design of our facilities to patient education materials, proposed policy and program and organizational changes that affect patient families. They also identify and work on specific projects to support families.

One such initiative is the parent mentor program, which connects parents of children with a new diagnosis with other parents with similar medical experiences

For PAC Coordinator Judy Doyle, the event was especially poignant.

Doyle’s 16-year-old son, Jack, was born with a rare genetic condition called cardiofaciocutaneous (CFC) syndrome. She got involved with the program in 2001 because she wanted to help families in similar circumstances.

“During the event, I noticed one of our inpatients out in the park, getting some air. At first, he was very down and grumpy. Everything I asked him, from whether he wanted some ice cream or some chalk to draw with, was met with a resounding ‘no,’”Doyle said. “But by the end of the evening, I saw him with a big bowl of ice cream and a huge smile, watching some of the artists at work. It was pretty touching to see his transformation.”

Doyle was so encouraged by the turnout and the participation from hospital employees, she plans to make it an annual event.

NOTE: Scroll over each image for a description. Click on the image to enlarge.

As part of our year-long anniversary celebration, we’re telling the story of Akron Children’s through the eyes of past and present employees, doctors, donors, volunteers and patient families. We encourage you to share your own memories and stories about us.

A ray of sunshine 9-year-old leukemia patient inspires parent mentor program

Akron Children’s has served hundreds of thousands of patients throughout its 125-year history, and every patient has a unique story that touched the staff in one way or another.

One in particular, Angie, made a lasting impression on Akron Children’s Hospital president and CEO William Considine.

Angie was a 9-year-old girl fighting leukemia, but she somehow found a way to spread cheer to everyone at the hospital.

Nurses leave a lasting impression

Sis with her little brother, the late Richard Karg in front of the barn at the farm.

Sis with her little brother in front of the barn at the farm.

For 125 years, Akron Children’s Hospital nurses have been caring for more than boo boos. Whether it’s changing bandages or giving a high-5, our nurses often become an extension of family to the patients and families they serve.

For one former patient, the care nurses gave her back in 1928 is still fondly remembered today.

Catherine “Sis” (Karg) Nockengost, now 91, was 3 years old when admitted to Akron Children’s for typhoid fever, a life-threatening bacterial disease spread through contaminated food, water or close contact.

“My brother and I would get milk from a farm near our house each day and bring back pails of it for breakfast,” said Nockengost. “After drinking it one day I got quite ill. My mom couldn’t get my high temperature to go down so the local doctor sent me to Children’s for treatment.”

Sis Nockengost

Sis Nockengost

Isolated because of the contagious nature of the fever, Nockengost relied on nurses not only for medical care, but also for comfort because her parents couldn’t visit her bedside. “I’m sure it was scary for me because I was so young, but I don’t remember it that way. I remember being cared for.”

Nockengost vividly recalls how a simple act of kindness made a difference.

“When I first arrived, the hospital was across from the Akron Beacon Journal building,” she said. “The nurses would pick me up so I could look out the windows to see all the pretty lights on the building and watch the people walking in the busy downtown area. I loved looking out those windows.”

Change of scenery

Akron Children's new hospital building at the corner of W. Buchtel and Bowery streets opened on Feb. 1, 1928.

Akron Children’s new hospital building at the corner of W. Buchtel and Bowery streets opened on Feb. 1, 1928.

Nockengost’s view changed on Feb. 1, 1928, with the opening of the hospital’s new building at the corner of W. Buchtel and Bowery streets.

“I remember moving to the new building in an ambulance, which was a pretty big deal back then,” said Nockengost. “When I got to my room, they put me in a brand-new crib with bars on it, which meant I couldn’t get out. I remember sitting in it watching the helpers clean the floors and staring at the bright white sheets. I was so upset I couldn’t see out the windows. But then my nurse came in and picked me right up so I could see out my new window. It was very comforting to me.”

After her time at Children’s, Nockengost went on to lead a healthy childhood. As an adult, she became a nurse and cared for patients of her own, including dozens during the polio epidemic of the 1940s.

As part of our year-long anniversary celebration, we’re telling the story of Akron Children’s through the eyes of past and present employees, doctors, donors, volunteers and patient families. We encourage you to share your own memories and stories about us.

sschenkenberger@chmca.org'

About Suzi Schenkenberger

Suzi Schenkenberger is a freelance writer and public relations consultant. With more than 15 years experience, Suzi has written for local and national brands including GE, Diebold, Akron Children's Hospital and E.J. Thomas Performing Arts Hall.

Celebrating 20 years of making a PACt to put families first

Judy Doyle visits with family

PAC coordinator Judy Doyle visits with the Rapp family.

When Dena Rapp gave birth to her 3rd child, it was one of the happiest days of her life. Three days later she felt that same world crashing down around her. Sophie was diagnosed with a rare congenital heart defect and required immediate surgery.

Rapp felt depressed and helpless. Drenched in tears, with her husband and sister by her side, she thought she might lose her mind. That’s when Parent Advisory Council coordinator Judy Doyle spotted her.

Doyle walked over with her coffee cart to offer them a “hug” through the simple gesture of free coffee and donuts. She introduced herself, listened to their concerns and comforted them by sharing her son’s story. Doyle’s been in their shoes before.

“Judy was so sweet,” said Rapp. “For a second, I wasn’t thinking about Sophie. She just made us feel really good about the whole situation.”

Doyle matched Rapp with parent mentor Amanda Adey, whose daughter had been born with the identical defect and underwent the same surgery. Adey talked Rapp through the surgery and what to expect, and answered her questions.

“I was so scared [Sophie] was going to die, but when I heard [Adey’s] daughter laughing in the background it comforted me,” said Rapp. “Judy and Amanda both knew the [surgeon] and that made me feel better, too.”

Sophie Rapp

Sophie

That’s the power of what PAC can do. Today, Sophie is a happy and healthy 1 month old. The Rapp family is just one of many who’ve been touched by Akron Children’s PAC programs.

PAC is made up of 2 councils of parent volunteers for the hospital’s Akron and Mahoning Valley locations. The councils oversee the parent advisor program, which places parent advisors on hospital committees, and the parent mentor program, which matches parent mentors with families to enhance patient care.

PAC is celebrating its 20th anniversary in September. As one of the oldest councils in the country, the PAC programs are offered free of charge as part of Akron Children’s dedication to family-centered care.

“PAC has brought parents to the table as partners at the bedside,” said Doyle. “It’s also about connecting with parents on that one-to-one level. We know what it’s like to be here. We know how scary it can be.”

A look back on PAC

PAC is a dream come true for Joyce Swords. After losing her daughter, Angie, to leukemia in 1992, she dreamed of establishing a council of parent advisors at Akron Children’s who acted as a resource for both hospital staff and patient families facing similar situations.

PAC coordinator Judy Doyle (left) and Akron Children's CEO Bill Considine (right) offer a family refreshments from the coffee cart.

PAC coordinator Judy Doyle (left) and Akron Children’s CEO Bill Considine (right) offer a family refreshments from the coffee cart.

Swords didn’t hesitate to go straight to the top and outlined her dream in a letter to hospital President and CEO William Considine. Not only did she get an enthusiastic reply from Considine himself, but she also received his pledge of support to put the plans in motion.

By September 1995, the program got its start advising on a range of hospital initiatives – from critiquing patient care information sheets to bettering wheelchair accessibility throughout the health system.

Swords’ dream of establishing a parent mentor program to train and match parents with families became possible thanks to a generous commitment of personal and corporate dollars from former ComDoc President Riley Lochridge.

In October 1999, she became the parent mentor program’s first part-time coordinator. Swords’ efforts to turn a great loss into something positive for all had finally paid off.

In 2001, Doyle took over her role. Three years prior, her son, Jack, was born with cardio facio cutaneous syndrome and she wanted to help families in similar circumstances.

“I found there was a lot to learn in a short time when you have a medically complex child,” said Doyle. “I also didn’t receive a whole lot of support from family and friends, not because they weren’t around, but they just didn’t know how. I wanted to help parents like me and be sure they had a voice in child care.”

Doyle built upon Swords’ foundation to continue to grow PAC, which became hospital-funded in 2005.

In the years that followed, she led the charge to enhance patient care by installing automatic doors for wheelchair access on the Locust Building’s parking deck; adding in-room phones and family restrooms in the pediatric ICU; and creating the first-online parent-mentor matching site.

Today, PAC has 220 parent advisors across the health system matched with more than 1,100 patient families. In addition, they sit on 26 hospital committees, including board-level ones, to influence initiatives.

As Doyle looks ahead to the next 20 years, she has her heart set on her own dreams for PAC. She envisions parents holding a seat on the hospital’s Board of Trustees and, perhaps more importantly, she imagines a parent liaison for the hospital’s quality and safety initiatives.

“I’ve seen firsthand how parents involved in safety measures can have a dramatic effect on children’s health and wellness,” said Doyle. “Patient safety is our No. 1 priority. My goal is to see Akron Children’s become a nationwide leader in family engagement for serious medical safety events, and I don’t think we’re too far off.”

As part of our year-long anniversary celebration, we’re telling the story of Akron Children’s through the eyes of past and present employees, doctors, donors, volunteers and patient families. We encourage you to share your own memories and stories about us.

lfrey@chmca.org'

About Lyndsey Frey

Lyndsey Frey is a freelance writer based in Cleveland, Ohio. She specializes in blogging and content publishing, search engine optimization and social media marketing. Her work has been published online and in regional and national publications, such as Inside Business, Cleveland, Akron Life and Internet Retailer magazines.

Independent streak Executive VP reflects on Akron Children’s freestanding status

Shawn Lyden is Akron Children’s executive vice president by day and Doggie Brigade volunteer by night.

He joined the popular pooch visitation program in January 2014 with his Newfoundland, Maya.

For him, it’s very rewarding to come in on Saturday afternoons and interact with staff and families without a coat and tie. It gives him the chance to view the hospital in a completely different light.

Q and A Health information line remains one of the most exciting achievements

One of the most exciting and memorable moments for Sherry Valentine throughout her career has been the launch of Ask Children’s, a free health information hotline for northeast Ohio families.

What started with 2 phones and 2 pediatric registered nurses (including her) quickly grew into a highly demanded service that today receives hundreds of thousands of calls each year.

It began as a daytime service for families, but later expanded into a 24-hour operation with the addition of Children’s After Hours. With this new service, the call center’s registered nurses began answering calls for doctors’ offices when their offices were closed.

5 turning 5! And what our family does to say Thank You

Spicocchi quintupletsAs with any milestone or celebration in our house, we cannot help but appreciate and be thankful for Akron Children’s Hospital. Earlier this month, we had a huge milestone of 5 kids turning 5!

Our lives changed forever in the spring of 2009. After using a low-dose fertility medication, we were just as shocked as our doctors to find out we were expecting quintuplets. We were only given a 10% chance of carrying the pregnancy and delivering healthy babies at that point.

At 24 weeks and 3 days – and 5 ½ weeks of hospital bed rest – our worst nightmare came true. Fear and sadness consumed every part of me that morning knowing my babies would be born too soon.

As I lay there in the operating room being prepared for delivery and waiting for my husband to make the 40-minute drive, I could feel each baby moving and kicking like a message telling me, “Mom, I’m alive don’t give up on us.”

Amie holds her quintupletsIt was at this moment of despair that the faces of what I call “our angels on earth” began to appear.

Dr. Protain was the first face from the NICU I could see. She grabbed my hand tightly. Looking in her eyes, I knew she did not want to give up hope.

Dr. Kantak was the next set of eyes behind a surgical mask I could see. He reassured me they were gathering teams to care for each baby. That moment was quickly followed by the transport teams arriving to safely transport our babies to Akron Children’s Hospital.

Next, we met Dr. Feick who came into the recovery room and communicated with us the details of the delivery. Her medical knowledge was astounding yet she spoke to us as if we were a part of her own family.

Our babies spent 4 very long, very emotional months in Akron Children’s NICU. They faced numerous medical obstacles and each had to undergo a heart surgery during their stay.

We are amazed at not only the medical care we received, but also the love and kindness showed to our family during this difficult time.

We are often asked, “how do you do it?”

Spicocchi familyOur experience 5 years ago puts all of the hard work we do into perspective. A busy day with my children now versus 5 heart surgeries this time 5 years ago…. I’ll gladly have my hands full!

Our appreciation towards the medical teams that cared for our family cannot be described. It is hard work and at times not easy, but every diaper I’ve ever changed, load of laundry I do, meal I prepare, face I wipe, story I read is all worth it and possible because of Akron Children’s Hospital.

We are forever grateful!

Akron Children’s NICU cannot be thanked enough for what they have done for our family and for all families and lives they touch. Our story might be interesting because of our number, but we are no more important than anyone else who has had a child in the NICU.

Spicocchi quintuplets turn 1As a way to show our appreciation to the NICU, our family participates in the Walk for Babies each year. Walk for Babies is an event started by Sam and Shelby Snellenberger that raises money specifically to help the families in the NICU. It’s a way to give back and help others.

I am honored to work for Akron Children’s Hospital and thankful each and every day for the care they provide patients and families.

As part of our year-long anniversary celebration, we’re telling the story of Akron Children’s through the eyes of past and present employees, doctors, donors, volunteers and patient families. We encourage you to share your own memories and stories about us.

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