Mom, sickle cell patient hopes to become a doctor

When she was first diagnosed with Sickle Cell disease, Deondra Clark was told she might not live past her 21st birthday. Now at the age of 26, she’s focused on being the best mother she can be and hoping to pursue a career in medicine.

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

It’s an inherited group of disorders where red blood cells form sickle shapes, die early and leave a shortage of red blood cells. When Sickle Cell crisis strikes, the blood flow is blocked resulting in unimaginable pain, infection and stroke.

Deondra Clark was experiencing that pain recently. Her stay at IU Health University Hospital was one of more than 20 since her birth. At 26, she is still beating the odds – she was told early in life that she might not live beyond her 21st birthday.

But she has hope. And she also has two young children – Zy’are Clark, 1, and Payton Wheat, 3 – who give her the will to live. One of four children Clark is the only one in her family who was diagnosed at birth with Sickle Cell.

As she nibbled at some mashed potatoes Clark recently joked with nurse Sarah Lee about their matching braces. Keeping her spirits up helps Clark focus on getting out of the hospital and back home with her children.

Born in Elkhart, Clark moved with her parents to Oakland, Calf. and returned to Indiana when she was in grade school. She spent her childhood on medication and had her first stroke at the age of 16 – severely affecting her memory.

She will never forget the pain – both physical and emotional.

“In school I couldn’t do much because of my disease. I missed out on sports, prom, and homecoming. Some things required being outside and my body doesn’t do well with cold. I couldn’t do swimming in school because if I jumped in the pool by body would go straight into crisis. It wasn’t a life like other kids,” said Clark, who is in the care of oncologist Dr. Rakesh Mehta.

She recently earned her diploma through the Excel Center and a certification as a business professional. She’s also working toward training as a certified nursing assistant and has her hopes set toward a career as a physician working with children diagnosed with Sickle Cell.

“I won’t stop until I see ‘Dr. Deondra Averielle Clark’ on my diploma,” she said.

She says she has a couple of people to thank for their encouragement. Through the Excel Center she met Tiffany Jewell who facilitated a senior seminar.

“She helped me through so much like times like this when I’m in the hospital she’d say ‘you’ve got this’ and ‘keep going, don’t give up.’ It took me awhile in school but when I finally walked across that stage she cried, I cried,” said Clark, who works part-time as a senior caregiver.

Through the Indiana Hemophilia and Thrombosis Center Clark attended a support group where she met Dr. Simone Eastman Uwan. Born in Guyana South America, Uwan grew up with her young sister and mother until she was 13, and immigrated to the United States in 1984. She became a doctor focusing on caring for the underserved. Last year, Uwan released the book “A Doctor in a Patient’s Body: Dreaming Big with Sickle Cell Disease and Chronic Pain.” The book addresses her life with a diagnosis of Sickle Cell disease.

The disease affects millions of people throughout the world. Last month, doctors reported the first evidence that genetically edited cells could offer a safe way to treat Sickle Cell disease. Reports indicate the gene-editing technique called CRISPR have started working, inside the body of the first sickle cell patient to receive the experimental treatment.

According to the National Institutes of Health in the United States most people who have Sickle Cell disease are of African ancestry. About one in 13 African American babies are born with the Sickle Cell trait and about one in every 365 is born with the disease.

Nurse practitioner rhythmically choreographs pediatric care

Mallori Walker doesn’t only see her young patients when they are sick; she enjoys following them through their lives – watching them grow from infants to teens.

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

As she walks into the exam room Mallori Walker picks up one-week-old Atlee Chapman and begins to talk to the baby with a soothing familiarity. Atlee was born November 13th to Joe and Tabatha Chapman of Rensselaer.

In any given day Walker can see between 20-25 patients in her Lafayette office.

“I really like that I get to take care of such a wide age range of children and watch them develop from infants to toddlers – to see that intellectual development and physical growth and to walk along with them on that journey,” said Walker, who started her career with IU Health 11 years ago working as a nurse in bedside care at both IU Health Arnett and Riley Hospital for Children.

Nursing is a second career for Walker who grew up in Joliet, Ill. She followed her older brother Justin “Chris” Walker to Indiana when he came to Purdue on a baseball scholarship. She also has a younger brother Jason. Her parents are Juanita Carr and the late Melvin Walker. After receiving a degree in education and working for Purdue athletics for five years, she returned to pursue her nursing degree.

It was her late grandmother – Elizabeth Walker – who had a profound influence on Mallori’s decision.

When she was working at Purdue, her grandmother had a stroke and Walker spent time in North Carolina helping her father care for his mom.

“I saw how the nurses cared for her. They were giving her a bath and the nurse invited me to help,” said Walker. “I told my grandmother how I wanted to be a nurse like them. Grandma hadn’t said much and I went to give her a hug ‘good bye’ and it was like divine intervention. The last conversation I had with her she said ‘be the best nurse you can be.’ I got home and applied to Purdue to go into nursing.”

Since then she has been recognized with a Daisy Award celebrating the extraordinary compassion nurses provide to their patients. She is also a recipient of the IU Health Values Leadership Award and serves on the IU Health Diversity and Inclusion team.

Four years ago she became a nurse practitioner and rounded at IU Health Arnett Hospital where she saw many of the newborns who are now in her pediatric care. She also teaches courses at Purdue including leadership in nursing and pediatric health assessment.

Her days can vary from seeing a well child to a baby who wakes up with a fever. All her patients have a special place in her heart and Walker fondly remembers each child along with the parents.

When asked about someone who made a special impression on her Walker talks about an 11-year-old who came in for a concussion two years ago.

“I saw her frequently and it took her awhile to get better. Sometimes you don’t know exactly how that care translates to the kiddos long term,” said Walker. But she recently received a note from the child’s parent that the young patient had nominated Walker as her Hoosier Hero. She went to school to surprise the girl who offered a presentation on Walker.

Who knows, maybe some day that child will pursue a career in healthcare.

And Walker’s advice to others who choose that path: “I would say if you are interested in healthcare then find an opportunity to shadow someone in the field. It’s a commitment and I would also find someone that can be a role model – someone that you can trust and learn from. I have had a handful of them who have been good to me since I started in bedside care and encouraged me to get my master’s degree. They would ask me questions about the patients during rounds and help me prepare answers to tough questions.”

More about Walker:

  • She is a trained dancer in jazz, ballet, tap and hip-hop and serves as the head coach for the Purdue Dance Team. Twenty-two dancers practice three to four times a week and perform at every Boilermaker football game and at select men’s and women’s basketball games, baseball, and soccer games. It is the same dance team Walker performed with at Purdue. She also danced for the Indiana Pacers for six seasons after college.
  • When her father died eight years ago, Walker made a trip to Haiti where she met and sponsored two boys. She continues to go to Haiti twice a year and has helped the young men move from an orphanage into their own home. “People were so gracious to me when my dad died. We were overwhelmed with love and support. I wanted to pay if forward.”

Unique collaboration aimed at keeping families intact

As more parents struggle with substance use disorder, more child protective cases are filed, and more parents are at risk of losing custody of their children to foster care.

A first-of-its-kind collaboration is working to break this chain of events and keep families intact. The team includes the Indiana Department of Child Services (DCS), Indiana University Health, Indiana University School of Social Work and IU Health Foundation. Supported by an $813,000 grant from the Richard M. Fairbanks Foundation, secured by IU Health Foundation, the collaboration will operate a two-year pilot program in Marion County.

Substance use disorders are often identified only when a DCS caseworker visits a home or a parent is in front of a judge in a custody hearing. Though parents at risk of losing custody due to substance use disorder are highly motivated to get treatment, the path to treatment is unclear and slow. The new program will connect parents with IU Health peer recovery coaches at the moment when they are at greatest risk of losing custody or prolonging separation from their children. These specially trained coaches – who themselves have experienced addiction and are in long-term recovery – can offer recovery resources on the spot via virtual care technology, potentially allowing children to remain in the home, or at least spend less time in foster care, while the parent is pursuing wellness.

“As the state’s largest healthcare system, IU Health is in a unique position to identify community health needs and marshal resources to address them. In this case, it allows us to meet people where they are, at home or in a courtroom,” said Jami Marsh, executive director, system philanthropic strategy for IU Health Foundation. “We are grateful for our partners in this effort and to the Fairbanks Foundation for funding this important work.”

Peer recovery coaches work on the IU Health Virtual Care Behavioral Health team and have access to professionals who consult on specific cases. After an initial consultation, individual treatment plans – which could include intensive outpatient recovery programs – are determined. Follow-up takes place within 48 hours after the initial consultation.

“Opioid use disorder and substance use disorder often create a tragic domino effect that hits Indiana’s children and families especially hard,” said Claire Fiddian-Green, president and CEO of the Fairbanks Foundation. “This collaboration will provide patients with access to treatment at a vulnerable time, increasing the likelihood of their success with recovery and helping to reduce the risk of family separation due to addictions.”

DCS has had positive experiences with programs involving peer recovery coaching in Monroe County, where the program showed that quick access to treatment and supportive addiction services were key.

“Our first responsibility is ensuring the safety of the child or children,” said David Reed, deputy director of child welfare services at DCS. “Ultimately, we want to preserve the family unit, so if we can get the adults in the home the help they need while keeping their family together, then we have succeeded.”

In the last five years, the percentage of child protective cases in Marion County has spiked. In 2017 alone, parent drug abuse was a factor in 53.7% of child protective cases. The full extent of the problem may be even larger, but data collection is incomplete. A secondary benefit of this program will be data gathering and analysis, which the IU School of Social Work will manage as part of the program evaluation.

Assuming the intervention program is successful, the IU Health Foundation intends to secure additional funding to continue and expand the program.

To contribute to programs you care about, or learn more about the IU Health Foundation, visit iuhealthfoundation.org.

Patient travels from New York for second liver transplant

When they began researching the top transplant programs in the nation, Jeffrey “Jeff” and Joan Labow decided IU Health was their best option.

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

They came to Indianapolis six weeks prior to his transplant and Jeffrey “Jeff” and Joan Labow have decided there’s much to like about the Circle City. They enjoyed a shrimp cocktail at Harry & Izzy’s, and a hearty Italian dinner at Mama Carolla’s, took in a play at the IRT, and marveled at the murals in Fountain Square and along Mass Avenue. They walked the downtown canal, around the Soldiers and Sailors Monument, and even attended the Annual Oktoberfest.

“Indianapolis is a vibrant and cultural city – like a small New York,” said Jeff Labow. This endorsement comes from a couple who has traveled the world – the South of France, Bangkok, Rio, Italy, Germany, Spain, Alaska, and England – just to name a few of their trips. Joan Lebow is a flight attendant for Delta Airlines.

The couple met in college at the City University in New York and married 38 years ago. They’ve spent most of their lives in Westchester County where Jeff worked as a probation officer in adult crime. In addition to working as a flight attendant Joan is a registered nurse.

When it came time to begin researching transplant hospitals, they followed their doctor’s recommendations. With Joan’s nursing background, they took a deep dive into their surf and decided on IU Health.

“I just felt comfortable here,” said Jeff, about meeting with his transplant coordinator Cheri Richard and Gastroenterologist Dr. Marco Lacerda.

It was when he was in college that Labow was diagnosed with Primary sclerosing cholangitis (PSC). The disease affects the bile ducts, a digestive fluid produced by the liver. PSC causes inflammation in the bile ducts, scars and blockage. Over time it builds up and damages the liver.

“My doctor back then told me it was deadly and I had five years to live at best and then a friend talked to me about transplant,” said Lebow. He had his first liver transplant in 1990 at the age of 40. “I had to get my state senator to see my case and I actually met Thomas Starzl,” said Lebow. Known as “the father of modern transplantation,” Starzl, was the first physician to attempt human liver transplant in 1963. His five decades of groundbreaking work set the course for most of the present day transplant surgeries.

After his first transplant, Labow was discharged in about a week and went back to life as usual. “It went well and I never looked back, but it wasn’t a great liver. There was some Ischemic damage,” said Labow. Ischemic hepatitis is typically caused when there is inadequate oxygen to the organ. In the years that followed Labow suffered constant itching from bile salt accumulation. He knew he would eventually need another transplant.

On October 10, under the care of Dr. Chandrashekhar Kubal, Labow received his second liver transplant. He remained hospitalized for several weeks and during his recovery took part in both yoga and music therapy at IU Health University Hospital.

The CompleteLife Program offers comprehensive therapies that attend to the body, mind and spirit of patients and caregivers. “It was amazing having these techniques to help in his recovery,” said Joan Labow. “He’s always been very much into music – especially jazz, blues, and rock. He hasn’t played guitar in awhile but it all came back to him in the hospital room.”

The Labows will remain in Indianapolis for several weeks and hope to do more exploring when Jeff gets stronger.

For how he says, he wants to focus on healing.

“It’s important to me to give back to others,” said Jeff. “I think the best way I can do that right now is fight to give other people hope. I think they can pick up on that vibe.”

This mother-baby nurse started a donor milk program

She’s a NICU mother and a nurse who has seen first-hand the benefits of breastfeeding. Now Ashley Corwin is heading up a special program at IU Health Jay.

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

She’s the mother of three and she’s a nurse who works with mothers and newborns. Those two qualifiers set the wheels in motion for Ashley Corwin to start a donor milk supplementation program at IU Health Jay.

“Having breastfed my three children, I know breastfeeding is challenging. As completely ‘natural’ as it is supposed to be that is not usually the case,” said Corwin, who began taking additional courses four years ago to learn more about the benefits of breastfeeding. A year later she became a, International Board Certified Lactation Consultant (IBCLC).

“Working in the newborn nursery we would have babies with low/failing blood glucose, infant and maternal health conditions and emergencies that would lead to the need for formula supplementation,” said Corwin. “I quickly determined when we were supplementing with formula that mothers were more quick to give up on their breastfeeding goals. Most felt they had already failed at breastfeeding if formula had to be used. Mothers were switching to formula sooner because they were discouraged.” Corwin is also the mother of a NICU baby who was given donor milk during his hospital stay. It drove her passion for donor milk supplementation and also her certification as a lactation consultant.

Her research led Corwin to Sarah Long, an international certified lactation consultant with the Indiana Milk Bank. Corwin learned the process to implement the use of Pasteurized Donor Human Milk at IU Health Jay.

According to the Human Milk Banking Association of North America, member milk banks follow strict screening, processing and dispensing guidelines developed in consultation with the Center for Disease Control and the US Food and Drug Administration. Donor milk is pasteurized using the Holder method – eliminating potentially harmful bacteria while retaining valuable nutrients. After pasteurizing, the milk is ready for freezing and storage and can be shipped to hospitals and outpatient families.

By January 2017, the program was in place at IU Health Jay Hospital.

Breast milk is known to contain antibodies that help fight viruses and bacteria and lower a baby’s risk of developing asthma and allergies. Research indicates babies who are fed exclusively breast milk for the first six months have fewer ear infections, respiratory viruses and bouts of diarrhea.

IU Health Jay is a critical care access hospital with a level 1 nursery (delivering babies at 35 weeks and above). The Indiana Mother’s Milk Bank was founded in Indianapolis in 2005 to help improve health for premature and ill infants. The program helps educate donors and recipients along with organizing milk drives to raise awareness of the benefits of breast milk. Riley Hospital also has a milk bank for NICU babies.

“This program has been very successful for our exclusive breastfeeding rates and has kept our mothers encouraged to breastfed,” said Corwin. Since 2018, 85 percent of newborns needing supplementation were provided donor breast milk. In all the hospital has provided donor milk to 72 mother-infants since April 2017.

New Nurse: Rachel’s Story – Week 4

In her second week on the floor, Rachel Ketelaar tackles the “learning mountain” facing every new nurse.

Wednesday

  • It will take a while to get used to the rhythm of 3-day workweeks. People tell me I won’t know what to do with my free time. But my mother warned me of this. She worked 3-day workweeks as a nurse and she told me that you won’t feel like you have a lot of free time because you have to cram life into your days off.
  • Wednesday is my first day back to work this week and I spent it in class. It was a full day of critical care instruction, about cardiac medications, how to read EKGs, and the physiology behind certain medical conditions. Although it was a very long day of sitting and listening to PowerPoints, the class overall was very helpful because I am going to be in contact with these medications and conditions frequently on A2N.

Thursday

  • This was a more difficult day. I carried around my binder from the critical care course to refer to, but I felt like I was still learning so many new tasks and skills and needing Ty’s assistance with a lot of them. I just want to see improvement in my work, but every time I was remotely close to mastering a skill, I was introduced to a new skill that I would need to know. In these past 2 weeks on the unit, I have been exposed to a lot of things that I will be consistently doing and I have only just started doing some of these tasks independently. By the end of today, I felt like the learning curve was more like a learning mountain.
My handy orientation binder. It’s full of useful information so I carry it around with me.

Friday

  • Well, today was a breath of fresh air. A lot of the tasks I was getting frustrated over on Thursday, I was catching on to today. The IV pumps I’ve been struggling to master started making sense to me. The flow of my day was smoother and I could tell I was becoming more efficient. I helped Ty discharge 2 of our patients as well.
  • I have started making a homemade worksheet to help organize my day. I don’t have a “nurse’s brain” yet that remembers everything. I love being able to cross off medication or vital sign reminders as the hours pass through my day. And at the end of the day, it’s nice to look down at my sheet and see all that I have accomplished.
  • Ty invited me to go out with her and a few other people from the hospital tonight. We went to a place downtown called The Tap. I’m excited to get to know the people at Methodist better outside of the hospital setting.
  • I’m starting to see that a week as a new nurse can be a roller-coaster. I go from feeling very confident in my nursing abilities to feeling like I didn’t retain anything from nursing school and then back again. From feeling overwhelmed with the learning curve to feeling like I’m making good progress. Today, I left the unit feeling like I have made progress and that makes it exciting to go back next week and keep moving up the learning mountain.

Read more:
New Nurse: Rachel’s Story – Week 1
New Nurse: Rachel’s Story – Week 2
New Nurse: Rachel’s Story – Week 3
New Nurse: Rachel’s Story – Week 4

Apply Yourself – Being a nurse at Indiana University Health means building a professional nursing career designed by you, with competitive benefits and a culture that embraces your unique strengths and supports your personal and professional goals. If you are seeking an organization where you can engage professionally, develop clinical expertise, embrace learning, foster new relationships and fuel your spirit of inquiry, apply today.

Patient advocate knows first-hand about grief

When she lost her husband to a horrific car-train accident, Christine Mulry Clausman turned her focus to support anxious patients and families waiting in the emergency room.

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

It’s an example of how everything can change in seconds. It was a steamy night in July when Christine Mulry Clausman and her daughter Meghan were out shopping for a birthday present for Christine’s husband Mike.

Mike Mulry and his son Patrick were taking a joy ride in Mike’s convertible – the top down and the warm summer breeze blowing on their faces.

Christine Mulry Clausman met her husband when she was 16. She was working at a movie theater in Rhode Island. Born in Ohio, she moved to Indiana and then Rhode Island when her father’s job was transferred. After high school Mike followed her back to Indiana where they both graduated from Ball State University. They were married in 1981 and had been married 17 years when Christine’s life was forever changed.

“My biggest fear in life was to lose my husband or one of my children,” she wrote in a reflective article. On July 24, 1999 as she was preparing for a family vacation and a celebration for her husband’s birthday, that fear became reality.

Mike Mulry was buried on his 41st birthday.

As his convertible approached an unmarked railroad crossing, Mike Mulry slammed on the brakes. The crossing sign and stop sign were hidden by trees. There were no warning lights so he could not see the tracks until he reached the crest of a hill. The car stopped but jolted onto the railroad tracks and into the path of an oncoming train. When Mulry realized the car had stalled and he couldn’t restart it, he threw himself on top of his son – saving Patrick’s life. The impact pushed the car into a ditch.

When Christine received the phone call all she knew was that Mike was being airlifted to one hospital and her son to another hospital. She didn’t even know a train had hit them. In the end they both ended up at the same hospital and Christine waited and waited, and waited some more – for answers. Her husband was taken into surgery. She never had a chance to see him, to tell him she was there for him, to hold his hand, give him a kiss or tell him he was loved. Mike Mulry passed four hours after entering the emergency room.

Patrick was 12 at the time. Meghan was eight. Christine was a widow with two young children.

Years went by, Christine worked in banking – where she became friends with a woman who introduced her to the man who would become her future husband. Warren Clausman was the brother of that long-time friend and 14 years ago Christine Mulry became “Christine Mulry Clausman.” Her son is now 33 and he recently walked his sister down the aisle when she was married at the age of 28.

The trauma of her loss, continued to haunt Christine. She felt she needed to do something to help others learn from her loss. She felt there needed to be changes in the hospital culture – giving family members better care during an emergency and access to their loved ones at all costs.

“I thought I was handling the whole grief thing because I was going to work, decorating for Christmas, and going to counseling. I had my kids in counseling too and one of the counselors asked the kids if they ‘could have anything back what would it be,’” said Christine. She was sure their answer would be “my dad.”

Instead, the kids said they wanted their mom back. It was like they lost both of their parents on the same day. Christine knew she needed to make a change.

“I was functioning pretty well but I was a shell of a person. I didn’t know anyone my age that was a widow. I didn’t know what it was like to be that person at the age of 40,” said Christine.

That was a pivotal point in her life. First she began volunteering at the hospital then she became a patient transporter. Gradually she carved out a position that is now known as “patient experience liaison.” Last year she completed the Fairbanks Ethics Fellowship with a focus on care for caregivers and families.

“Healthcare providers are so overworked and sometimes under appreciated and it made me realize not only do I want the caregivers to be more compassionate but I want to be sure we do a better job taking care of our caregivers,” said Christine.

In the past decade her role with IU Health West has evolved along with the changes in the hospital culture. When she first started in her role she was at the bedside of patients along with their families. Now chaplains and social workers are in that role. As a patient advocate, she works 24 hours a week rounding the emergency room waiting area consoling families and loved ones. She offers blankets, cups of coffee, heat packs and ice packs. Most of all she listens. Her goal is to make sure every patient and guest is heard.

“Over the years I know I have made many people’s worst day of their life better. When I connect with a family and patient and calm their fears or be there with them during a horrible situation, I know my purpose,” said Christine. “It makes me feel like Mike didn’t die in vain.”