Stories | - Part 2

Seeing the world with a new set of eyes

When my son, Max, was born 6 years ago, I certainly did not consider myself to be at risk for having a child with Down syndrome. I was 30 years old, a healthy eater, non-smoker and fitness buff.

But after we received Maxs diagnosis, I soon realized there were countless young mothers of children with DS.

Like many other parents who have received a similar shock at the birth of their child, I went through an emotional whirlwind of sadness and disappointment, which would be immediately followed with feelings of guiltfor feeling the sadness and disappointment.

I told myself early on that no matter where Max fell on the scale of functioning, I would do everything I could to enhance his learning and abilities. But most of all, give him a loving, supportive home.

Six years later, Max is now in kindergarten. He loves to play on our iPad where he has his own folder that he can get into and choose which game he wants. He loves going to the park and swimming. He can be quite ornery at times and makes us laugha lot.

Do we have trying times with him? Absolutely. But I also have them with my 9-year-old, typical daughter.

Of course their struggles are not the same, but all kids have struggles nonetheless. As parents, we just need to help our kids get over those struggles, whatever they may be.

Because of Max, I look at the world through a new pair of eyes. That has been a gift. I can tell you a dozen things about a person just by how they act around my son. I have lots of goals for Max, and with the support of all the people who love him, he will no doubt reach them.

Max has visited many specialists at Akron Childrens Hospital, including Ophthalmology, Hematology, Genetics, Cardiology and Neuroscience. Through all of these visits, the physicians were so kind and compassionate many times, calming moms nerves as I was a wreck prior to each visit.

The care Max has received at Akron Children’s is unparalleled. I am so thankful that we have this valuable resource just 30 minutes north of our home!

As part of our year-long anniversary celebration, were telling the story of Akron Childrens 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.

Birthday gift shows impact of life-changing experience

Brianna and her fiance, Matt

Twenty-four years ago, Barbara Hunter felt that God picked the right doctors, the right nurses and the right hospital to treat her then 3 ½ year-old daughter, Brianna.

Thats when Akron Childrens Hospital diagnosed Brianna with a rare condition called retractile sclerosing mesenteritis. It damaged 1 foot of her bowel, leading to toxic shock, coma and near death.

Now approaching her 28^th birthday, Brianna is healthy and happily engaged to Matt, 31.

Shes glad she doesnt remember the acute crisis period of her condition, but she has fond memories of her 7-year follow-up with Akron Childrens doctors, nurses and therapists in what she remembers as her childrens family.

Brianna’s story was featured in the Spring 1993 issue of Children’s Progress.

As a birthday present for Brianna, Matt contacted Akron Childrens to ask that her story be updated for the hospitals 125^th anniversary. (Her story was initially told in 1993 in a hospital publication called Childrens Progress.)

Topping the list of updates is her current training to become a child life specialist.

I never knew what I wanted to do but due to my connections with Akron Childrens I learned about this fairly new field, Brianna said. I wanted to give another child what I received from the caring nurses, doctors and social workers at Akron Childrens.

Harrowing medical journey

Before being diagnosed with retractile sclerosing mesenteritis, Brianna was a healthy preschooler, living in Canton, Ohio, with single mom, Barbara, and her 3 older brothers.

Then, in April 1991, everything changed. Brianna woke up with a stomachache, followed by vomiting, fever and restlessness. Barbara rushed her to Aultman Hospital ER, where she worked as a maternity nurse.

Briannas condition rapidly deteriorated. Her pulse was weak and rapid, her lips were blue, and they were unable to get a blood pressure reading.

Brianna was dying in front of our eyes, Barbara said.

Brianna was life-flighted to Akron Childrens Hospital, where Dr. Robert Klein, the now retired chair of pediatric surgery, confirmed through an X-ray that Brianna had a hole somewhere in her intestinal tract.

That same night, in a 3-hour surgery, Dr. Klein removed a 1-foot area of the small intestinal covering (mesentery), which was free-floating and gangrenous. When the mesentery pulled away, it dumped intestinal contents into Briannas abdomen, causing septic shock and peritonitis, a potentially fatal inflammation of the abdominal lining.

Even after surgery. Briannas diagnosis was still a mystery. In search of answers, Dr. Klein contacted an international rare disease registry, which had identified only 5 cases of retractile sclerosing mesenteritis.

Today the condition is thought to be a spectrum of conditions involving the mesentery, yet only 250 cases have been reported to date.

For weeks after surgery, Briannas status was touch-and-go. Her blood pressure dropped critically low, she had 13 IV lines and a breathing tube, and she had lung damage caused by aspiration of stomach contents.

They told me she had a 10 percent chance of survival, Barbara said.

By week 3, Brianna was still in a coma and had developed blood clots, which lead to a third surgery.

She didnt look much like a little girl, except that a wonderful nurse, Nelda Wilson, had put her hair in a ponytail, said Barbara.

Another blood clot occurred in week 4, followed by a fourth surgery. By this time, Brianna had been in a medically-induced coma for 1 month.

Finally, Brianna started to show signs of improvement. Doctors cut back on her medication and she slowly began to regain consciousness.

By week 5, she was in a regular patient room and nurses worked with her to eat small amounts of soft food.

At first, Brianna had difficulty communicating with her mom but slowly she starting talking and received physical therapy to relearn to stand and walk.

She finally came home on Memorial Day Weekend in 1991.

I was a regular at Akron Childrens for 7 years after my recovery, Brianna said. The things I remember most are the hugs I got from everyone Dr. Klein, the nurses, therapists they were all wonderful!

Looking back

Brianna and her mother, Barbara

Brianna looks back on the experience with gratitude.

I feel for what my mother had to go through, she said. She has always been there for me.

Shortly after Brianna moved to Rochester, NY, in 2013, she had a bowel obstruction due to what a GI specialist in Rochester called a flipped area of intestine. She avoided surgery because the bowel area flipped back.

Besides that incident, she has regular visits with her physician and remains in excellent health.

Brianna points to her experience at Akron Childrens as the motivation for her passion to help others.

Matts impetus for requesting Briannas story be updated came when he saw her enthusiasm for sharing her story with her university class.

Matt and Brianna

As for Matts gift, Brianna calls it the best birthday present ever.

Special caregivers dont always realize their impact, Brianna said. They made a big difference in my life, which I cant wait to pass on.

About Melonie Michelson

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Miranda is among rarest of the rare with Koolen-De Vries syndrome

This is our little fighter Miranda. She is the rarest of the rare. One of only 100 people diagnosed in the United States with the rare Koolen-De Vries syndrome.

We started with Akron Children’s Maternal Fetal Medicine and have spent more time here at Akron Children’s Hospital in this lady’s first year of life than we have at home.

Akron Children’s literally is our home away from home. She has at least 15 specialists, including PT, OT, and feeding and speech therapy. She had open heart surgery at 2 months old as well as two other surgeries so far. She continues to defy the odds, but could not do it without our family here at Akron Children’s.

Our therapists are not only our therapists, but our friends. We could not make it without the love and compassion from Della and the volunteers at the Reinberger Family Center. They are always there with a reassuring hug and smile after a rough day. They always know Miranda by name and love her so much.

Akron Children’s saved our baby’s life and continues to do so on a daily basis. Not being able to eat, we embrace all things G-tube related, so in her first birthday pictures we wanted to show the love to the feeding tube community and the world. Here’s to Miranda’s incredible first birthday picture!

Hospital experience inspires former patient to become a nurse

My story begins in June of 2006 at 12 years old. I started to experience a sudden onset of unusual symptoms including back pain, weakness, and loss of sensation of my body.

The symptoms appeared very quickly and within hours I was losing my ability to walk. I was taken to the emergency department at another hospital only to be sent home soon after due to accusations that I was just simply exaggerating my symptoms.

The next morning I woke up to a nightmare. I could no longer feel my body. My hands were stuck in a closed-fist position and I couldn’t walk. My parents took me to our family doctor, who advised my parents to take me to Akron Children’s immediately.

I remember feeling a breath of fresh air once I arrived. I remember each and every person who walked into my room from the nice male nurse who scooped me up from the wheelchair and placed me into the bed to the pretty brunette nurse who let me lean into her during a lumbar puncture.

I felt I was in good hands. Although I was scared and unaware of what was going on, I felt comfortable.

After multiple tests a neurologist came into my room to give us the diagnosis. I was diagnosed with a rare neurological disorder called transverse myelitis. I was also told it was the first TM diagnosis at Akron Children’s Hospital.

Because each TM case is unique, my prognosis was to be determined. I was admitted after this and began my journey to recovery.

Petie the Pony visits Morgan

Although there are many other places a 12 year old would probably want to spend his or her summer, my stay at Children’s was a good one. I remember feeling down and scared that I may not walk again.

Each day I had a new visitor, whether it was a dog, a volunteer, or even a miniature pony. The staff was absolutely phenomenal. I was blessed with amazing nurses, a great set of therapists, and awesome doctors.

I remember crying during a physical therapy session, wanting to stop, and the therapist encouraged me to keep going. Each and every staff member brought a little bit of sunshine to my gloomy situation and I can’t thank them enough for it.

The road to recovery was a long one but eventually I was able to walk on my own again. I’m now 21 years old and a semester away from graduating nursing school. My decision to be in the medical field and work in pediatrics was decided after my experience at Akron Children’s.

My dream has always been to work with children, hopefully at Akron Children’s Hospital, and be one of the staff members a child never forgets. I will WALK across the stage in May of 2016 and officially become a nurse soon after. It will be the same year that marks 10 years since my diagnosis.

I owe a lot to Akron Children’s Hospital and am so thankful for the exceptional care that I received.

Thank you.

Trail Blaise-r Infectious disease specialist still shines after nearly 40 years

If you ask Dr. Blaise Congeni, hell tell you the future at Akron Childrens is bright.

He should know.

In his nearly 40 years of serving as an infectious disease physician here, hes witnessed how Akron Childrens has grown and expanded, attracting a large number of faculty to offer an even greater number of programs.

Pausing to reflect Hiccups no match for Dr. Robert Stone

Throughout his nearly 50-year tenure here, Dr. Robert Stone has served in numerous roles, from the director of gastroenterology and the cystic fibrosis clinic, to chairman of the department of pediatrics, to chief of the medical staff.

He has also held a seat on the hospitals board of trustees since 1982, and was influential in the hiring of current president, Bill Considine, while serving on the search committee after Roger Shermans retirement in 1979.

So its only natural that this institution would hold a special place in his heart.

Finding comfort in an uncomfortable situation

My oldest daughter, Hannah, fell out of a tree she was climbing on and broke her arm. We took her to Akron Children’s Beeghly campus in Boardman. I have to tell you the staff and care are excellent!

I usually am quite uncomfortable in hospital situations but felt very comfortable and at ease at Akron Childrens hospital.

We ended up having to go to the main hospital in Akron because they had to sedate her. Both locations demonstrated the same level of personal care in an extremely exceptional way.

The main hospital was very busy in the ER and I was amazed at the level of sensitivity, caring, and compassion that the entire staff showed on a very busy night. It is impressive to see a staff that excels at what they do and excels equally as well in making children and their parents feel at ease during a stressful time.

I told my wife if I ever have to go to the hospital, take me to Akron Childrens.

We are very grateful to have a place like Akron Childrens here in the Valley. Our sincerest thanks and appreciation for the great service you provide!

Moving up the food chain Summer job becomes career for cafeteria manager

In 1975, Nancy Twitty came to Akron Childrens looking for a summer gig and wound up staying for 32 years.

She began as a food service employee and worked her way up to cafeteria manager before she retired in 2007.

Twitty enjoyed her position immensely. She got to meet and converse with the countless patient families and employees who trafficked Kids Cafe daily especially on days when macaroni and cheese was on the menu.

Heart-felt thanks for a golden anniversary

Teresa and her mom

A 50th wedding anniversary is traditionally marked with gifts of gold, but how do you recognize a 50th heart surgery anniversary?

For one former patient, the milestone is filled with thanks and appreciation because she knows first-hand that a healthy heart is worth its weight in gold.

When Teresa Cruikshanks, now of Nitro, WV, was 5 years old, her mother noticed she was tiring easily and struggling to keep pace with her brother and sister.

My mama would come out back to check on us and Id be laying in the yard because it was too hard for me to keep up, Teresa said.

Suspicious of their daughters behavior and development, Teresas parents took her to their pediatrician who recommended she be taken to Akron Childrens Hospital for testing.

We learned I was born with a heart abnormality which caused the valve that carries blood to the lower body to be blocked off, said Teresa. My doctors (John Kramer, pediatric cardiologist, and William Falor, cardiovascular surgeon) recommended I undergo a new procedure to fix the problem. The surgery was so new the American Heart Association asked my family if the surgery could be filmed and used for physician education.

Although her heart surgery was a big deal, the young Teresa was more interested in watching other children at the hospital, playing with her new orange stuffed dog and seeing one very exciting visitor.

Daniel Boone visited the hospital while I was there, she said. I remember him coming off the elevator with his buckskin cap and gun. He was the real thing. It was really neat. Ill never forget it.

Teresas procedure and recovery kept her at the hospital for nearly a month so her parents made many trips from Byesville, Ohio, to Akron to be with her. She even stayed an extra day just so her dad, John Cruikshanks, could help take out her stitches.

I was pregnant at the time and had children at home so it was a very tiring and scary time for our family, said Juanita Monfredi, Teresas mother. Im very thankful for the procedure Teresa received and to Childrens for how they helped our family.

After surgery, Teresa went on to lead a healthy childhood, even earning the presidential physical fitness award in high school. She continues to thrive as an adult.

I see the scar every day and dont think much about it anymore, she said. But, this year, I see it and think wow its been 50 years and Im still going strong. Im very grateful to Childrens for their wonderful care.

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.

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Celebrities with roots in northeast Ohio share in Akron Children’s anniversary celebration

A lot can happen in 125 years. But some things, like where you call home, will never change.

What started as humble beginnings as a day nursery in 1890 has slowly evolved into the largest pediatric healthcare system in northeast Ohio.

Much has happened during Akron Childrens 125-year history, but one thing always remains, our commitment to provide high-quality, family-centered care for the children and families of our community.

We are proud of our roots in northeast Ohio, and are touched by the overwhelming support we get from the communities in which we operate.

We know that much like Akron Childrens, there are many people from our community who have accomplished great things and touched the lives of many, but their humble beginnings started right here in northeast Ohio.

Thats why, in celebration of our 125th anniversary, we reached out to some of these friends to help show appreciation for our generous donors, world-class staff and supportive community for making Akron Childrens Hospital what it is today.

Check out our video and hear the stories firsthand from our friends who have been impacted by Akron Childrens and are proud to have the best pediatric care available right in their own backyard.

We thank everyone for helping us celebrate our special milestone year by sharing their stories and always providing unwavering support as we continue to grow and provide extraordinary care close to home.

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