The Tragedy of Losing a Child

October is Sudden Infant Death Syndrome (SIDS) Awareness Month. Of the tragedies a parent can endure, perhaps none is more heart wrenching than the loss of a child.

Jen Hittle, a nurse at IU Health Arnett and consultant in the Clinical Risk Management department, believes in finding the good in every situation. She has made it her mission to spread the word on the importance of safe sleep practices for infants since her son Brenton passed away in 2013.

“Sharing Brenton’s story is not easy, but I hope by sharing, I will help open people’s eyes and hearts,” Jen says, “I have been given the opportunity to educate and bring awareness to such an important issue and hopefully it will make a difference and decrease the chance of it happening to others’ loved ones.”

Jen and her husband Brock welcomed their fifth child, Brenton, into the world on July 19, 2012. He was a happy, healthy baby boy. Being the youngest of five, he was surrounded by love and spoiled by his parents and older siblings.

At just 6 months and 5 days old, Brenton passed away, a victim of Sudden Infant Death Syndrome (SIDS). He was at the sitter’s, put down for a nap in his pack in play on his tummy with his blanket. The sitter went to check on him and he was not breathing. Even with the quick work of paramedics, they were unable to bring him back. They found nothing wrong with him and determined the final cause of death as SIDS.

With Jen’s medical background, she had a hard time wrapping her mind around not knowing what caused her son’s death. She reached out to SIDS researchers to see if they could give her a reason why.

Researchers responded to her, letting her know of strong findings that SIDS is caused by a defect in the part of the brain that controls breathing, heart rate, etc., while sleeping. Babies who have this defect look and act completely normal during the day, but defects are unmasked during sleep. These findings helped Jen understand the importance of the “why” behind safe sleep practices.

It was Jen’s heartbreaking journey that led her mission to educate people on the importance of safe sleep practices. Whether it be talking at local high schools, to future parents, seasoned parents, babysitters or fellow team members—Jen and her family share Brenton’s story to bring awareness to SIDS and the significance of safe sleep.

She wants to encourage all to listen to their healthcare providers on safe sleep techniques. “I know as an experienced mom with several older children it is not easy to practice safe sleep,” Jen says, “But it is definitely worth it. They are knowledgeable and have our best interest at heart.”

Approximately 3,500 infants die annually in the United States from sleep-related deaths. Even though this statistic is alarming, many of these deaths are preventable. Learn the ABC’s of Safe Sleep.

  • Alone – Babies should always be on their own sleep surface. Bed sharing is a risk factor for SIDS and other sleep-related deaths.
  • Back – Babies should be on their backs for every sleep.
  • Crib – The crib should be empty. This means no bumper pads, pillows, blankets, stuffed animals, toys or supplies such as diapers and diaper wipes.

Lending a helping hand and an encouraging word

October is National Physical Therapy Month and we caught up with one of our rehabilitation team members helping a patient at IU Health Simon Cancer Center.

By IU Health Senior Journalist, T.J. Banes, tfender1@iuhealth.org

As she recently helped IU Health Simon Cancer Center patient James Dayton Jr. walk laps in the hallway, Catherine Zaegel talked about why she chose a career in physical therapy.

Born in St. Louis, Zaegel graduated from St. Louis Missouri’s Doctoral Physical Therapy Program and began working at IU Health two years ago.

“I like that I get to help patients make a little progress daily toward their goals whether pure strength, or getting back to work or home,” said Zaegel. It was when she pursued ballet that Zaegel was first introduced to a career in physical therapy.

“I never felt I was a good enough dancer to make a career out of it but was able to have exposure to PT through friends and courses that showed me I could keep ballet in my future by helping fellow dancers,” said Zaegel. “It wasn’t until I began my clinical education that I realized how amazing the world of acute care physical therapy is.”

October is National Physical Therapy Month – a time to bring awareness to the physical therapy profession, and the benefits of physical therapy. According to the Bureau of Labor Statistics, the job outlook for physical therapists is projected to grow by 28 percent by 2026. It’s estimated there are about 200,000 physical therapists in the United States with an additional 60,000 projected to be added in the coming years.

Working with the surgical oncology team Zaegel, helps patients build up their strength and endurance during recovery. The past two years she has also rotated to the cardio/pulmonary team, medical transplant team and the Center of Life for Thoracic Transplant (COLTT) lung transplant team. She also volunteers one night a week in the ER at Riley Hospital for Children assisting with patient triage during busy hours.

As she talks to Dayton during his laps Zaegel reminds him of the new mobility action plan. The logs are kept in the patient’s rooms to help them track their walking and exercise.

“If we don’t see the patient daily, it helps them have autonomy over their goals,” said Zaegel.

Warrior completes chemo; Looks forward to continuing college

Abigail “Abbi” Sarabyn hopes to become a pediatric neurosurgeon. She says her recent lymphoma diagnosis has made her more determined and more compassionate toward others.

By IU Health Senior Journalist T.J. Banes, tfender1@iuhealth.org

With her best friend at her side, Abigail “Abbi” Sarabyn recently rang the bell at IU Health Simon Cancer Center signaling the end of her chemotherapy.

It was what she hopes is the end to a long and unexpected interruption in her life as a college student – planning on a career in medicine.

A 2016 graduate of Pike High School Sarabyn, 22, played volleyball most of her life. Her parents James and Kim Sarabyn said she was always healthy. They describe her as a “warrior” on the volleyball court – often coached by her father.

So it was no surprise to them when she came out fighting after a diagnosis of Diffuse Large Cell B-Cell Lymphoma (DLCBL). The cancer starts in the white blood cells and usually grows in lymph nodes- the pea-sized glands in the neck, groin, armpits and other parts of the immune system. It can grow fast but three out of four people are reportedly disease free after treatment.

At IU Health Simon Cancer Center, in the care of oncologist Dr. Jose Azar, Sarabyn learned she had fluid around her heart and tumors on each kidney, her adrenal gland and small intestine. During her weekend hospitalization her small bowel erupted and she was taken into emergency surgery.

In May she started chemotherapy – and learned that the treatment was working to reduce the mass. After a semester off of classes, she hopes to get back to IUPUI and continue working toward a career as a pediatric neurosurgeon.

Breast cancer patient: “I’m the healthiest I’ve been in a long time”

Two years ago Nina Coley was diagnosed with breast cancer. Now she is setting her sights on new adventures.

By IU Health Senior Journalist T.J. Banes, tfender1@iuhealth.org

The way Nina Coley looks at life is this: “When you get a diagnosis that makes you check your mortality and reality, you live differently.”

She’s an example of what that life looks like after diagnosis. After working 35 years with the U.S. Postal Service, Coley retired and is studying to obtain her real estate license. She’s also working through a “bucket list” that includes taking a cruise to the Panama Canal, traveling to Dubai, and visiting several national parks.

And she’s speaking out about the importance of screening and early detection of breast cancer. She’s participated in the Susan G. Komen Race for the Cure, the IU Health Breast Cancer Coffee Club, and Making Strides of Hendricks County Walk.

She is also taking part in an exhibit this month “Looking Forward: Beauty. Pride. Defiance” by photographer and writer John Sherman. The exhibit features photographic profiles of 12 women who either were undergoing chemotherapy at the time of the photo shoot or who had chemo treatments in the past. Coley was 19 months past diagnosis when she was photographed. The exhibit continues through the end of the month at the Harrison Center, 1505 N. Delaware St.

Coley, the mother to Chasneen, and grandmother to Monica, was diagnosed two years ago with Triple-Negative Breast Cancer in the left breast and HER2-Positive, Estrogen Positive, in the right breast. Under the care of IU Health hematologist/oncologist Dr. Sridhar R. Bolla she underwent six rounds of chemotherapy and 26 radiation treatments. Dr. Mary Lester performed surgery – a bi-lateral procedure.

It had been five years between mammograms when Coley discovered her cancer. She completed her last treatment on Aug. 1, 2018.

“I am so fortunate to have an amazing team at IU Health,” said Coley. “I’m the healthiest I’ve been in a long time and I owe it all to the great care I received and my relationship with God. To him be the glory.”

Mammograms – What you need to know

There are a few things holding some women back from getting an annual mammogram. Ashley Poe team leader of mammography at IU Health Saxony talks about some of those issues.

By IU Health Senior Journalist T.J. Banes tfender1@iuhealth.org

Educating others is the best part of Ashley Poe’s job as team leader of mammography at IU Health Saxony. And as she talks with patients she learns exactly what holds them back from regular mammograms.

“A lot of women don’t think they need them every year and a lot of women don’t think they need them if they don’t have a family history of breast cancer,” said Poe. She started working with IU Health nine years ago and is passionate about helping others learn about the benefits of annual mammograms.

Working with four mammographers including Rita Keeling and Monica Bulmahn, and Dr. Matthew J. Nartker, radiology administrator, Poe says team members see anywhere from 25-30 patients a day. And still, there are women who choose not to get a mammogram for a number of reasons. Here are a few:

  • They worry about it taking too much time. Truth: A mammogram takes about 20 minutes.
  • Some have heard horror stories about the compression. Truth: “I’d say for the most part people are surprised about how much less it hurts than what they have heard,” said Poe. “I attribute that to the improvements in technology and the way the compression time has been reduced.”
  • They are concerns about false positive results: Truth: A 3D mammogram has become standard. What that means is the improved imagining combines multiple breast x-rays into a 3-dimensional image that helps radiologists better detect any signs of cancer.
  • There is no family history of breast cancer so they don’t see the need for screenings. Truth: “Genetic-linked breast cancer only accounts for about 15 percent of all breast cancers. Most of the patients we diagnose have no family history,” said Poe.
  • They want immediate results. Truth: Although the technologist does not provide the results of the imaging, if there is any abnormality spotted, a patient receives a call from a doctor – such as a fellowship-trained breast radiologist – within 24-48 hours of the detection.
  • Some worry about being exposed to radiation. Truth: Radiation is minimal. “A lot of times when we catch the cancer it is at Stage 0 or 1 which shows the importance of getting regular mammograms,” said Poe.

“We follow the guidelines by the American College of Radiology which recommends women begin getting annual mammograms at the age of 40,” said Poe. “We tell patients mammography is based on comparison. We want to see the breast stay the same from year to year. If they’re having them annually we can detect changes easier and find cancer at the earliest stages when it is most treatable.”

ER nurse: A critical part of patient care

Erin Vogt, an ER nurse at IU Health Saxony says her role – thinking and acting quickly – can mean the difference in the life of her patient.

By IU Health Senior Journalist T.J. Banes tfender1@iuhealth.org

She gets the ambulance call “cardiac arrest” and Erin Vogt grabs gloves, and begins setting up, ready to dive in to help save a life. It’s all in a days work.

Vogt, an ER nurse and clinical coordinator at IU Health Saxony is part of a team recently recognized with some of the highest marks in patient satisfaction. Their patient needs range from treatment for a chronic bronchial infection to urgent care at the 24/7 cardiac catheterization lab.

To commemorate National ER Nurses Week, Vogt talked about the rewards and challenges of her job. A graduate of Westfield High School, Vogt started her healthcare career as an EMT.

“After surrounding myself with doctors and nurses I realized I loved the emergency aspect and knew that was the way I needed to go,” said Vogt. Her coworkers encouraged her to go back to school to obtain her nursing degree and she continued her career in ER.

“I like the quickness of it – the unexpected patients and outcomes,” said Vogt. “I think what makes our department so good is that there are so many things that are knowledge-based. You may have something come up that you haven’t seen for the longest time but you pull out snippets of information that help you use your mind quickly.”

At IU Health Saxony, Vogt said ER workers operate as a team.

“One of the first things I learned when I came here is the atmosphere is calming and relaxing because people truly want to work together for the best patient results,” said Vogt. “A lot of our patients comment about how the nurses, physicians, medics – all the clinicians – give the same information. We want to be forthcoming and consistent in our approach to talking to patients.”

Whether it’s a life-threatening situation or a seasonal illness, Vogt said she focuses on reassuring families that they are in the best place possible.

“We want to get diagnostics to patients as quick as possible but we also want to reassure them that we’ve gotten things taken care of,” said Vogt. “Sometimes that means giving them permission to rest and relax and that gives them a peace of mind.”

Lung cancer patient: “The therapy is working. It’s keeping me alive.”

He was a non-smoker and when Thomas Stierwalt learned he had lung cancer, he did what came naturally – he began to read and research his diagnosis and treatment options.

By IU Health Senior Journalist T.J. Banes @tfender1@iuhealth.org

He is intrigued by the science of plants and Thomas Stierwalt says he’s fascinated by the treatments for cancer.

Stierwald grew up on a farm in Gosport, Ind. and attended Purdue University. While pursuing his undergrad degree Stierwalt took part in the ROTC and met a friend who introduced him to an Army research facility. It gave him the opportunity to follow his passion and obtain both masters and doctoral degrees in plant pathology and plant breeding.

But his heart was in farming so he eventually joined his father in the fields.

“We nearly starved to death,” he says laughing at the hard work. He and his wife, Joan married 53 years ago. Both natives of Gosport, they’ve known each other since she was in the fifth grade and he was in the eighth grade. They have two girls, a boy and six grandchildren.

After his stint with farming he took a job with an agricultural chemical company and eventually retired from Bayer, a life sciences company.

Stierwalt says he’s been healthy throughout his life. As a non-smoker he was stumped when he got the diagnosis of lung cancer in May of 2015. It’s estimated that 10-15 percent of lung cancers occur in non-smokers. According to the American Cancer Society some of the leading risks for non-smokers developing lung cancer is exposure to radon gas, secondhand smoke, and cancer causing agents such as asbestos and diesel exhaust, and air pollution.

“I had been working in the agricultural chemical industry for 30 years. In research and development we worked with a number of compounds. We protected ourselves but you still never know what you’re dealing with and how it can impact your health,” said Stierwalt.

“We began reading and researching to learn all we could,” added his wife.

The cancer was discovered when he developed pneumonia and fluid developed in his right lung. Under the care of IU Health oncologist Dr. Nasser Hanna Stierwalt completed several rounds of chemotherapy. When the chemotherapy was no longer effective, Steirwalt began taking an immune therapy drug.

“My oncologist says he knows of someone living six years on this treatment and I’m going on two,” said Steirwalt. “It’s been an interesting process learning about immune therapies that are targeted for specific diseases and it’s fascinating to learn there is hope. Cancer doesn’t have to be a death sentence. There are no side effects. I feel great and it’s working.”

Breathing easier by day and by night

Pulmonary fibrosis threatened her life, but after a lung transplant and nighttime breathing therapy provided by IU Health Home Care, a 73-year-old woman is counting her blessings.

By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Madonna Boerner is breathing easier, and so is her husband, Bob, after Madonna received a lung transplant at IU Health Methodist Hospital.

But nighttime was still a tough time because Madonna’s snoring often kept Bob awake. Madonna suffered idiopathic pulmonary fibrosis, a scarring of the lung tissue that makes breathing difficult.

After her transplant, the West Terre Haute woman suffered a series of setbacks requiring hospitalization. But before she went home this last time – earlier this year – she received something to help both her and her husband sleep better at night.

Through IU Health Home Care, Madonna was hooked up with something called non-invasive ventilation (NIV) therapy, providing breathing support through a face or nasal mask. The therapy supports patients with severe neuromuscular or restrictive thoracic diseases and chronic respiratory failure, providing breathing assistance without surgery or a trach tube.

“I sleep better. I get up feeling pretty good,” the 73-year-old woman said.

She was so grateful that she called her patient representative in tears to thank her for getting her approved for the nighttime breathing therapy.

Once patients are set up with NIV at home, respiratory therapists routinely check in to ensure continued care and compliance.

With help from her NIV therapy and her new lung, Madonna, a mother of two and grandmother of four, is able to get out and about again and spend quality time with her grandkids, including a baby granddaughter.

She admits the idea of a transplant was scary. At the time that it was proposed, she was 70 years old. She wondered if she could tolerate such a major operation. But a battery of tests proved her fitness for surgery.

Besides, the prognosis without transplant was even scarier, she said. There is no cure for pulmonary fibrosis. The average life expectancy is three to five years.

She was added to the transplant list in November 2017 at age 71 and within a few days, she got the call that an organ was available.

“I was headed out the back door with my bag when the phone rang again,” she said.

Never mind, she was told. The organ was not a good enough match. So she waited – her bag still packed – for two more months. On Jan. 24, 2018, she got the call again.

“I said ‘hot dog’. I was ready!”

She received her transplant surgery at Methodist the next day.

Asked what she likes to do with her new lung, her response was simple: “I like to breathe without oxygen.”

Madonna said the transplant experience was bittersweet for her, knowing her donor was a 26-year-old male.

“If it wasn’t for people like him, people like me wouldn’t be here,” she said. “He was awfully young.”

To learn more about organ donation, contact the Indiana Donor Network.

OR nurse is a friend in a hard time

OR nurse Alissa Robbins says one of the best things about her job is advocating for patients.

By IU Health Senior Journalist T.J. Banes @tfender1@iuhealth.org

She has a big smile and her brown eyes light up when Alissa Robbins talks about her job as an OR nurse.

“There are so many things I like about my job that I can’t honestly tell you just one,” said Robbins, 32. But with a nudge she begins to list those things – there’s the patient contact, knowing that she is an advocate for patients under anesthesia. She sees herself as “a friend in a hard time.” Then there’s the ongoing education.

Robbins obtained her undergraduate degree in biology from Butler University. Two years later she began the accelerated nursing program through IUPUI and started her career as a student nurse at IU Health University Hospital four years ago.

Working on the cardiothoracic team she serves as both a circulating and scrub nurse in the OR. She is fascinated by procedures involving the lungs, esophagus, and structures in the chest cavity. Working alongside Drs. Kenneth A. Kesler, Karen M. Rieger, Thomas J. Birdas, and DuyKhanh P. Ceppa gives Robbins plenty of opportunities to ask questions.

“They are all so knowledgeable and I’m always so interested in the whys – why does the heart do this; why do the lungs do this,” said Robbins. “I always continue learning and getting a better understanding of anatomy, physiology and disease processes.”

She’s also learned a lot from her extended family members in healthcare – aunts, an uncle and cousins – and her team members.

“I would say someone who has had the greatest influence on me is Megan Lee. She was my preceptor when I was in school. I was able to do an elective course in OR and low and behold a year later I was on her team. She has shown me so much from her compassion for patients and knowledge on the job,” said Robbins.

One of Robbins’ earliest memories in her nursing career happened outside the OR. She was preparing to take a young man with intellectual disabilities into surgery. He became frightened, stood up from his wheelchair and ran.

“Something kicked in and I caught up with him and walked several laps outside the OR to help him relax. It showed me that the path I have chosen doesn’t just contain nursing to the OR,” said Robbins.

More about Robbins:

  • She grew up in Danville, the oldest daughter of Paul and Sherri Robbins. She has a younger sister Audra Stevens, who has a two-year-old son.
  • She swam all through high school and taught swimming lessons.
  • She enjoys spending time outdoors and working out at CrossFit.

Transplant patient: “Dr. Mangus saved my life.”

Haley Hodgen was an avid volleyball player in high school and was training for the Indianapolis 500 Festival Mini Marathon when she became seriously ill. She ended up at IU Health where she received not one – but multiple organ transplants.

By IU Health Senior Journalist T.J. Banes tfender1@iuhealth.org

On what was the first day to register for next year’s 500 Festival Mini Marathon, Haley Hodgen sat in her office in the landmark 500 Festival building. Her cubby in the offices occupied by Williams Randall Advertising included the following: pill boxes, white bins filled with snacks, a blood pressure cuff, and a black and white photo of a woman who could almost be her twin.

That woman was Hodgen’s 24-year-old organ donor. Hodgen knows that the young woman saved five lives – one of them was Hodgen’s. She says her donor was one half of the life-saving team. The other half was IU Health transplant surgeon Dr. Richard S. Mangus.

“Dr. Mangus saved my life a year before transplant because in 2014 I lost my original intestine to a blood clot,” said Hodgen. A year later, on Aug. 17, 2015, she was back in the OR with Dr. Mangus for a multivisceral transplant – stomach, pancreas, liver, small and large bowel.

There’s some irony in the fact that Hodgen’s office is in the 500 Festival Building. She was training for the Mini Marathon when she first became ill.

“I’d been healthy all my life running half marathons working hard and living like a normal 24-year-old when I started getting sick,” said Hodgen. She was baffled when she started losing weight, experienced severe abdominal pain and learned her spleen was enlarged. Over time she began to lose her fingernails and toenails –a result of a lack of nutrients absorbed into her body.

“One day I’d run ten miles and the next day I could barely take 20 steps without my body cramping. During a procedure with IU Health gastroenterologist Dr. John DeWitt a blood clot was discovered in her liver, a very serious condition. In a matter of days the blood clot spread to her small intestine causing her to go into emergency surgery to remove her small intestine. She spent three weeks in the hospital.

“It is 21 feet long and I only had three feet remaining after surgery,” said Hodgen. “They told my family I needed multi-organ transplant and they thought it was crazy. I’d been healthy all my life.” She tried to maintain her life with what remained of her small intestine. But she knew her body was severely impaired. Even with a huge weight loss she said she looked eight months pregnant. Her eventual diagnosis was a rare genetic mutation, myeloproliferative disease, characterized by blood clots.

“I had no quality of life. I was a ticking time bomb. No one wanted to operate on me because I was so young they were afraid the procedure would leave me worse off. But Dr. Mangus had a different view. He knew the transplant would save my life,” said Hodgen.

She is forever grateful.

Each Christmas she writes him a personal thank you letter.

“This is a man who is a husband and father. I think it’s important to acknowledge the sacrifice he makes to save the lives of others,” said Hodgen.

She’s also thankful to her family and co-workers. She is the oldest daughter of Bill and Sandy Hodgen and has twin sisters Lori Hodgen and Lindsey Shannon.

“I can’t say enough about our CEO Gerry Randall. He told me to take care of myself and I’d always have a job,” said Hodgen, who works as a web designer for the firm. Other co-workers – Gail Hayes, Dan Zumbiel, David Stanton, Joy Cropper and many others also supported her with hospital visits and fundraisers.

To maintain her health Hodgen has limited her diet to eight foods including turkey, eggs, and chicken but she recently re-introduced fruit.

“The first year after transplant was very hard. I was readmitted three or four times. I know I need to take care of myself,” said Hodgen. The last time she spent a night in the hospital was Feb. 2016.

“I’m 5’11 and at my worst I got down to 112 pounds. I looked emaciated. I’ve gained 50 pounds in the last two years,” said Hodgen. She hasn’t started running again but she has gradually gotten back to the gym and she spends much time doing one her favorite childhood activities – hanging out on the lake with her family.

“Other than a big scar on my belly, I feel normal again. I have a bunch of different specialists at IU health to manage my care but I’ve graduated from going every week to every month for labs,” said Hodgen. “It’s been a bittersweet graduation – I’ve gone from knowing so many people in the hospital to now only seeing a few. It’s a good thing.”