Archive for the ‘Patients’ Category

Answered prayers

My nephew has a new kidney!

Jeffery Spellman, the young man I told you about earlier this year, has a beautiful new, fully functioning kidney as of June 2.

We are grateful and indebted to the incredible generosity of an unknown donor and their family and will always be praying for them.


Lisa Spellman and her nephew, Jeffery

They will never know the magnitude of this gift.

But we do. I do. And so do total strangers to whom I have spontaneously blurted out the good news.

“My nephew just got a kidney transplant and it’s working perfectly!”

The looks of surprise quickly turn into smiles and hearty congratulations.

Happiness is definitely infectious.

We have a lot to be happy about. And the transplant team couldn’t be happier with how perfectly matched the donor kidney is to Jeffery. You can’t get better than 100 percent, with zero antigens.

Jeffery had 99 out of 100 antigens and finding that one person whom he would be compatible with, well, it took two years. For others, the wait is much longer.

This transplant was definitely orchestrated by a higher power.

Jeffery should have waited 10 years for a kidney, his transplant surgeon, Alexander Maskin, M.D., told us.

The best part was when he said the kidney began producing urine immediately. It’s as if it woke up the moment it touched Jeffery’s body.

As for the surgery, which we were sure would last well into the night, it only lasted two hours and 39 minutes.

We were amazed by how quickly things went.

Dr. Maskin seemed to think it took longer than the usual hour procedure.

“He was a very difficult transplant,” he said explaining the length of time to Jeffery’s wife Ashleigh and other family members in the waiting room that night.

As Dr. Maskin explained the surgery he spoke of a potentially fatal infection that he discovered in Jeffery’s bladder that would have destroyed the new kidney.

Someone was definitely looking out for Jeffery and his precious new kidney.

Jeffery will be just fine.

And I can breathe again.

UNMC hosting largest study ever done on rare movement disorder

More than 50 patients from around the world have come to Omaha
It’s a debilitating disorder that causes people to feel like they are going to fall down when they are standing.

It’s called primary orthostatic tremor (OT), and this week the University of Nebraska Medical Center is hosting more than 50 OT patients from around the world in what is the largest study ever done with OT patients.

“It’s a very rare condition, so it’s quite an achievement to get so many patients to congregate in Omaha,” said Diego Torres-Russotto, M.D., a movement disorders specialist at UNMC. “OT is a miserable disease. Hopefully, this study will help us come up with some answers for these people.”

Dr. Torres-Russotto, who is an associate professor in neurological sciences, said patients will be coming from Spain, England, Canada, Australia and the United States.

The International Orthostatic Tremor Meeting started Monday evening and will run through Friday. This marks the second time Omaha has hosted the event, with the previous Omaha meeting held in 2012. Last year, the meeting was held in Australia.

The patients will each undergo a two-hour physical examination by a movement disorder specialist and a physical therapist, as well as electrophysiological studies. The goal of the study will be to determine if the patients really do have postural instability and to assess the presence of ataxia, a neurological sign consisting of lack of voluntary coordination of muscle movements.

In addition to Dr. Torres-Russotto, the research team in neurological sciences includes: John Bertoni, M.D., Ph.D., professor, and Amy Hellman, M.D. and Danish Bhatti, M.D., both assistant professors.

Collaborators from UNMC’s hospital partner, The Nebraska Medical Center, include: Jen McKune, Lori Schmaderer and Katie Blacketer — Physical Therapy Department; and Cindy Penke, Regan Iske and Bobbi Roeder – case managers in the Movement Disorders Department.

Dr. Torres-Russotto said participants in this year’s study will go through four new features:

  • They will undergo an electroencephalogram (EEG) test, which records brain waves in an effort to determine the place in the brain that is causing the problems. Najib Murr, M.D., assistant professor, neurological sciences, will be performing and analyzing the EEG arm of the study.
  • They will test a smart phone app that can be used to diagnose the disease by measuring tremors in the legs.
  • They will receive specialized video analysis developed at Massachusetts Institute of Technology.
  • They will receive psychiatric assessment by a UNMC psychiatrist, Mark Fleisher, M.D., that will attempt to measure their level of suffering.
    OT is characterized by high frequency tremors of the legs when in a standing position and an immediate sense of instability. Because of the speed of the contractions, OT is often not recognized as a tremor when compared to essential tremor or Parkinson’s disease.

Dr. Torres-Russotto said OT is greatly underdiagnosed and often misdiagnosed as other neurological problems such as Parkinson’s, essential tremor or psychogenic problems.

“People with OT do not typically complain of tremors,” he said. “Their biggest problem is the sudden disabling event that occurs when they stand. They feel unsteadiness and imbalance while standing. They can only stand for a short period of time, in some cases only seconds. There might be a feeling of panic. They need to sit down or start walking to relieve their symptoms.”

OT is a repeating cycle that happens all through the day, he said. It is life-changing and unrelenting.

“It is an incapacitating disorder,” Dr. Torres-Russotto said. “It impacts your life in just about every way imaginable and makes routine tasks such as going to church, standing in line at the grocery checkout, even going to the bathroom a major challenge.”

Some other facts about OT include:

·        It is more common in females.

·        There’s usually a 10-15 year lag between onset of symptoms and diagnosis.

·        Onset typically occurs around age 40.

·        It won’t kill you, but it typically gets worse over time.

·        Diagnosis is confirmed through electromyography, or EMG, a test that measures the electrical activity of muscles.

·        By touching something, the feeling of falling improves.

The UNMC study will be blinded, Dr. Torres-Russotto said, as half the participants will have OT and the other half will have no balance issues.

He hopes the study will lead to further research and treatment options.

For more information on OT, go to

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State of Nebraska Certifies The Nebraska Medical Center as a Comprehensive Level Trauma Center

The state’s largest hospital becomes its only certified Comprehensive Level center

Less than one month after beginning to offer full-time trauma coverage, The Nebraska Medical Center has earned Comprehensive Level status with the State of Nebraska. State inspectors visited the medical center in July, just before it began offering 24/7 trauma care. Among the medical center’s strengths cited in the report: the development of a full-time pediatric trauma program, close working relationships with local rehabilitation facilities and regional education and outreach programs.

“This certification from the state truly validates the work we’ve been doing in recent years to become the region’s premiere comprehensive trauma center,” said Paul Schenarts, MD, trauma medical director at The Nebraska Medical Center. “The expertise and experience of our fellowship-trained surgeons, subspecialist physicians, nursing care and other health care support from hundreds of our other team members is unparalleled in this region.”

In years past, The Nebraska Medical Center shared its Comprehensive Level status with the Omaha Trauma System which was made up of The Nebraska Medical Center and Creighton University Medical Center (now part of Denver-based CHI Health). Until August 1, each hospital had a set schedule of days when it was the city’s designated trauma center. Since August, each hospital has offered its own independent trauma service.

“We have seen a real increase in the number of trauma patients in the six weeks since we began offering 24/7 care,” said Rosanna Morris, chief operating officer and chief nursing officer of The Nebraska Medical Center. “Fortunately, we were prepared for the increase and welcome these new patients. We truly see it as a reflection of the public’s trust in the extraordinary care our staff provides.”

The Nebraska Medical Center will next seek certification from the American College of Surgeons (ACS), which is only available to hospitals offering full-time trauma care. Medical center leaders plan to begin the application process for ACS certification later this year. The ACS review and inspection process typically takes about one year to complete.

Virus-free, Dr. Sacra leaves med center

by Taylor Wilson, The Nebraska Medical Center

Rick Sacra, M.D.

As UNMC Chancellor Jeffrey P. Gold, M.D., put it, Nebraska 1, Ebola 0.

Rick Sacra, M.D., pictured below, the patient who has been treated at The Nebraska Medical Center for the Ebola virus over the past three weeks, has left his room in the Biocontainment Unit and will soon head home. The CDC confirmed that two separate blood samples taken from Dr. Sacra 24 hours apart show the virus is no longer in his bloodstream.

“I am so grateful,” Dr. Sacra said. “Just so incredibly grateful to have gotten through this illness! Many were praying for me, even people I did not know personally. During the time I was here, there was a growing confidence that God was answering those prayers, and that I was steadily improving. Thanks to God and to the team here at The Nebraska Medical Center!”

“It was very gratifying for the entire team that treated Dr. Sacra to see him walk out the doors healthy again,” said Phil Smith, M.D., medical director of the Biocontainment Unit at The Nebraska Medical Center and professor of internal medicine/infectious diseases at UNMC. “When he arrived three weeks ago, he was extremely ill with a virus the world doesn’t have a lot of experience treating. To know that we were able to play a role in helping his body fight off the virus so he could be reunited with his family and continue doing the work he’s so passionate about makes the years we’ve spent training and preparing for something like this more than worth it.”

Dr. Sacra said he also felt fortunate to be in the hands of the team caring for him at The Nebraska Medical Center. “My care team was excellent,” Dr. Sacra said. “They were compassionate, patient and provided an incredibly high level of care.” He said as he started to feel better and was waiting to be allowed to leave the unit, those caring for him did everything they could to keep him entertained. “They brought me books to read, played chess with me and we had conversations about dozens of different topics,” Dr. Sacra said. “My only worry is that I may not recognize them when I am out of the unit, since I only know them by their eyes and their voices!”

The doctors caring for Dr. Sacra say they feel privileged to contribute to the world’s fight against the Ebola virus. “We’ve been in constant contact with the CDC, the World Health Organization and a member of the White House medical staff,” said Angela Hewlett, M.D., associate medical director of the Biocontainment Unit and assistant professor of internal medicine/infectious diseases at UNMC. “We have been sharing everything we’ve learned about caring for Dr. Sacra and we will continue to do so as we have the opportunity to examine all of the data related to his treatment. It is an honor to not only help save our patient’s life, but to potentially save the lives of others fighting this disease around the world.”

Dr. Gold called the Sacras a remarkably courageous family and praised their care team at the med center — the members of the team in the biocontainment unit who put in long hours in a stressful situation, the rest of campus for continuing to perform their duties while helping ease fears of others in the community, and those in the research and clinical areas, a partnership he said “made all the difference.”

Dr. Sacra contracted the Ebola virus while treating patients in West Africa. He works for SIM, an international mission group that responds to areas of need worldwide. “I would like to offer a heartfelt ‘thank you’ to the exceptional doctors, nurses and staff at The Nebraska Medical Center for your caring hearts, keen minds and gifted abilities with Rick and Debbie,” said Bruce Johnson, president, SIM USA. “May God multiply your work, that it will result in the survival of thousands in West Africa who may become infected with Ebola.”

Dr. Sacra became the first patient in The Nebraska Medical Center’s Biocontainment Unit on Sept. 5. Dr. Sacra received a research drug called TKM-Ebola, which inhibits the virus’s ability to replicate. He was also treated with plasma from Ebola survivor Dr. Kent Brantly, along with other supportive care. Doctors say it’s not clear yet if it was a single factor or a combination of all of them that helped Dr. Sacra survive.

“I just want to say thank you to everyone who got me through this,” said Dr. Sacra. “Everyone made me feel so welcome that I am now an official lifetime Huskers fan!”

New cancer screenings available

by John Keenan, UNMC public relations


Jennifer Sanmann, Ph.D., Tanner Hagelstrom, Ph.D., and Amber Carter.

The UNMC Human Genetics Laboratory at the Munroe-Meyer Institute has developed a new set of hereditary cancer tests that can pinpoint genetic mutations that predispose people to certain types of cancer. These tests are now available to providers across campus.

Panels are available to detect familial forms of breast, ovarian, uterine, colorectal, pancreatic, renal, neuroendocrine, and nervous system neoplasms.

“Our laboratory is pleased to offer a service that helps not only with diagnosis but also with treatment management, risk assessment, and familial screening,” said Warren Sanger, Ph.D., laboratory director. “We anticipate that these hereditary cancer tests will be a valuable tool for physicians and their patients at the Fred & Pamela Buffett Cancer Center.”

Associate laboratory directors Jennifer Sanmann, Ph.D., and Tanner Hagelstrom, Ph.D., led the effort to internally develop and validate these panels for clinical use in close collaboration with the Fred & Pamela Buffett Cancer Center.

“We started small, launching a six-gene, high-risk breast cancer panel last November,” Dr. Sanmann said. “With the addition of six new hereditary cancer panels, our services now encompass a wider range of hereditary cancer types.”

The lab has been working closely with Sarah Thayer, M.D., Ph.D., associate director of the Fred & Pamela Buffett Cancer Center, chief of surgical oncology and program leader for cancer services in the clinical enterprise to ensure that physicians in many departments and divisions will find the tests useful.

“Physician input is critical to our laboratory’s test development,” Dr. Sanmann said. “We continually strive to expand our laboratory services in ways that are meaningful for patient care.”

Dr. Thayer praised the collaboration between the Human Genetics Laboratory and the Fred & Pamela Buffett Cancer Center, saying the newly developed panels will advance insights into people who may have familial cancers.

“Genomic characterization of tumors, as well as patients who get these tumors, is really going to be at the forefront of cancer diagnosis and treatment, and hopefully prevention, as well,” she said.

Licensed and certified genetic counselors are available through the Fred & Pamela Buffett Cancer Center’s Hereditary Cancer Clinic to help navigate the complexities of the testing process and to discuss the genetic results with patients. The test can be ordered through the OneChart ordering system, under “genetics” and “hereditary cancer panels.”

For more detailed information about the specifics of each of these hereditary cancer panels, visit the Human Genetics Laboratory website.

Cancer: No Longer a Death Sentence


Chandrakanth Are, MD

The six letter word “cancer” can still hit a serious blow to the mind, heart and soul. Even for someone blessed with enormous fortitude, the diagnosis of cancer can be devastating. But there is good news around. While we may not have found the magic bullet for treating cancer we are definitely better than a few decades ago. The survival of all patients for five years from their initial diagnosis from all types of cancer has increased from 50 percent in the 1970’s to 66 percent in the 1990’s. Similarly, we have also seen a decrease in the death rates from all types of cancer since 1990 in men and since 1991 in women. Compared to the peak rates in 1990 for men and 1991 for women, the cancer death rate for all sites combined in 2006 was 21 percent lower in men and more than 12 percent lower in women.

While the figures on a broad scale look somewhat reassuring, what does it mean to an individual patient? The patient that is seen in the clinic and told that she has colon or rectal cancer that has spread to the liver. Less than three or four decades ago, there really were not that many options to treat these kind of patient other than provide palliative care. We have come a long way from there to current day that many of these patients go on to live beyond not just five years but even ten years. How did this happen? This is due to the combination of improved radiology, better chemotherapy and safe surgery.

The current state-of-the-art radiological tools such as CT scan and MRI tell us exactly the extent of the disease which helps us plan clearly as to who needs an operation and more importantly who does not. While it is important not to deny a patient that needs an operation it is even more important and paramount not to operate on someone that does not need one. For a long time there was only one chemotherapy drug available for treating patients with colon and rectal cancer that has spread to the liver. Within the last 15 years, we have seen an impressive introduction of new drugs that has created a paradigm shift in the management of these types of patients. Lastly, surgery for removing a portion of the liver has also evolved significantly. These procedures were very risky and associated with a very high mortality rate in the 1970’s. We can currently perform these procedures safely with minimal mortality and most of the patients go home to resume normal lives.

These advances do not give us reason to sit on our laurels but they provide us the impetus to go out and tell patients and public that there is more to do. More to do so as to, increase the awareness, that there is a state-of-the-art Cancer Center within the heart of Nebraska that can provide cancer care unparalleled to any other institution in the world. More to do so as to, keep the patients and public educated of the options available to treat cancer. More to do so as to, promote the cutting edge research taking place at the Nebraska Medical Center to find novel treatment options for cancer. Finally, more to do so that we can take care of patients with cancer and heal not only the disease but mind, body and soul. For, cancer these days does not always have to be synonymous with a death sentence.

Neurosurgery Training Program is Part of What Makes the Med Center Special


William Thorell, MD is an associate professor of neurosurgery at the University of Nebraska Medical Center.

As surgeons, we’re always gratified to hear from patients who’ve had great recoveries from serious injuries or diseases. Treating those conditions and helping people down the road to recovery are the reasons my colleagues and I became neurosurgeons. And those outcomes are a big part of what makes the med center a special place. But it’s more than a hospital; it’s more than a medical school. It’s where the areas of patient care and education come together that really sets this center apart.

A great example of this is the UNMC Neurosurgery Training Program. A few weeks ago, it wrapped up its 21st year. Lyal Leibrock, MD and Leslie Hellbusch, MD started the program back in 1993 with the goal of developing the neurosurgical expertise available in Omaha and throughout the region. The program’s first resident, John Treves, MD, graduated in 1998 and true to the program’s original goal, Dr. Treves still practices at Midwest Neurosurgery and is a key faculty member for the training program here at the med center.

The quality of the training program has increased over the years. It’s intensive training which lasts six to seven years. As you can imagine, it’s highly sought-after training for residents. They do rotations at The Nebraska Medical Center, the state’s largest hospital, as well as Children’s Hospital and Medical Center and Nebraska Methodist Hospital. Those who are accepted are some of the most bright and talented medical students from their respective schools. The reputation and success of the training program can be traced back directly to the culture set forth 21 years ago by Drs. Leibrock and Hellbusch; and continued on by my colleagues and partners who have continued to lead the program in the years since.

As a proud graduate of the program myself, I’d like to congratulate this year’s residents: Joe Cheatle, MD and Kyle Nelson, MD. Joe and his family will be relocating to South Carolina for practice and Kyle and his family will return to their home state of Minnesota.

Including Dr. Treves, many of the program’s graduates continue to practice neurosurgery in the region. These include: Mark Puccioni, MD, Brad Bowdino, MD, Guy Music, MD, Dan Tomes, MD, Scott Boswell, MD and myself.

The Nebraska Medical Center’s neurology/neurosurgery program was ranked 31st nationally on US News and World Report’s list of America’s Best Hospitals.

U.S. News & World Report Again Ranks The Nebraska Medical Center as One of America’s Best Hospitals

Omaha, Neb – U.S. News & World Report surveyed nearly 5,000 hospitals nationwide to come up with this year’s list of Best Hospitals. For 2014-15, U.S. News evaluated hospitals in 16 adult specialties and ranked the top 50 in most of the specialties. Just 3 percent of the hospitals analyzed for Best Hospitals earned national ranking in even one specialty.

The Nebraska Medical Center is ranked 36th nationally for its cancer care, 29th for gastroenterology and GI surgery, 29th in nephrology, 31st in neurology and neurosurgery, 41st in pulmonology and 25th in urology. This is the best performance for the hospital in terms of national recognition in these rankings. The Nebraska Medical Center was also high performing in six other specialties including:

  • Cardiology and heart surgery
  • Diabetes and endocrinology
  • Ear, nose and throat
  • Geriatrics
  • Gynecology
  • Orthopedics

In addition to these rankings, U.S. News & World Report ranked The Nebraska Medical Center as the top hospital in the state.

“We are truly honored to be recognized as a leader in so many different areas,” said Bill Dinsmoor, CEO of the clinical enterprise that includes The Nebraska Medical Center. “It’s a reflection of the serious medicine and extraordinary care our physicians and staff provide to our patients every day.”

U.S. News publishes Best Hospitals to help guide patients who need a high level of care because they face particularly difficult surgery, a challenging condition or extra risk because of age or multiple health problems. The annual rankings, now in their 25th year, recognize hospitals that excel in treating the most challenging patients.

“We see patients from all 50 states and over 40 countries,” said Brad Britigan, MD, dean of the University of Nebraska Medical Center (UNMC) College of Medicine and president of the clinical enterprise that includes The Nebraska Medical Center. “Thanks to our world-renowned physicians and specialty programs, we’re able to diagnose and treat the sickest of the sick.”

Serving as the teaching hospital for UNMC, research is also at the forefront, especially when it comes to life-changing cancer therapies.

“Our scientists and cancer specialists are working together every day to stop cancer and save lives,” said Jeffrey Gold, MD, UNMC chancellor and board chairman of the clinical enterprise. “We are providing breakthroughs. I’m very proud of the teamwork that defines our remarkable academic medical center.”

U.S. News recognizes hospitals that perform nearly at the level of their nationally ranked peers and represent valuable regional sources of quality care.

“The data tells the story – a hospital that emerged from our analysis as one of the best has much to be proud of,” said U.S. News Health Rankings Editor Avery Comarow. “A Best Hospital has demonstrated its expertise in treating the most challenging patients.”

The specialty rankings and data were produced for U.S. News by RTI International, a leading research organization based in Research Triangle Park, N.C. Using the same data, U.S. News produced the state and metro rankings. The rankings are available at and will appear in the U.S. News “Best Hospitals 2015” guidebook, available in August.

Biocontainment Unit Uniquely Qualified to Assist with Ebola Outbreak if Needed

A representative from the U.S. State Department visited the med center this morning to take a closer look at the capabilities of The Nebraska Biocontainment Patient Care Unit located on campus here. This was strictly a fact-finding mission, to make government officials aware of the unit’s capabilities in case the need arises for treatment of patients with the Ebola virus here in the U.S.

“We are uniquely qualified to care for these types of patients,” said Philip Smith, MD, medical director of the unit. “The unit has been operational for nearly ten years, and our medical staff has been drilling for countless hours for this type of event. At this point, the most severe threat has been in west Africa, but we’re prepared to care for American citizens if necessary.”

The Biocontainment Unit is only one of four such units in the country equipped to handle an outbreak of this nature. The others are at Emory University in Atlanta, GA, which is already receiving two American citizens who have contracted Ebola, The National Institutes of Health in Maryland and a facility in Missoula, MT.

“We want to make it very clear that we haven’t been notified of any patients who are headed to Nebraska for treatment,” said Angela Hewlett, MD, associate medical director of the unit. “This representative was only here to learn more about our unit and to determine if it meets the qualifications necessary for Ebola patients in the future. We’re honored that national health leaders have expressed confidence in our ability to help address this global health crisis. This is a clear indication that the med center is an international resource in health care, research and education.”

If a patient were to be treated in the unit, there would be no danger to others on campus or anyone else in the area. “The Ebola virus is very difficult to contract,” said Dr. Smith. “The risk it would pose to people outside the unit would be zero, and this is something that can be very safely treated without infecting health care workers.”

The unit has never been officially operational since it opened in 2005. However, it was designed to provide a full spectrum of care, from quarantine to intensive care treatment. It is designed to handle everything from smallpox, SARS and avian influenza to the Ebola virus. It is staffed by 30 highly-trained medical professionals who have special training in disaster management, cardiac life support and bioterrorism.

In the Bubble


Curtis Ledbetter was a three-year starter at the University of Nebraska-Lincoln, earning first-team All-Big 12 honors. In 2005, he helped the Huskers win their first College World Series game in school history.

It started at the age of six. All he needed was a ball and glove. Baseball was life.

“Dad coached me, and my mom played catch with me in the backyard. It was a whole family deal.”

Growing up in Lawrence, Kan., Curtis Ledbetter’s passion for the game only increased with age, and started to shape his future.

“It’s what I wanted to do. The sport I wanted to pursue in college.”

After playing one season at Garden City Community College, Curtis transferred to the University of Nebraska-Lincoln. He was a three-year starter, earning first-team All-Big 12 honors. During his senior year in 2005, Curtis earned Big 12 Tournament MVP honors, and helped the Huskers win their first College World Series game in school history.

“I fell in love with Lincoln,” says Curtis. “I’m so thankful that I had the opportunity to play baseball there.”

After graduation, Curtis was drafted by the Seattle Mariners. He played three years of professional baseball before moving back to Lincoln. That’s when a once-in-a-lifetime opportunity came his way.

“I was offered the position of Director of Operations for Nebraska baseball. My first interview for the job was with Coach Tom Osborne. Pretty neat experience. Made for one heck of a story.”

In 2009, Curtis’ story got even better. He proposed to his girlfriend, Monica on April Fools Day.

“Gives you a good understanding of our relationship,” he laughs.

The two were married a short time later, and started trying to have a baby.


Curtis proposed to his girlfriend, Monica on April Fools Day. The two were married a short time later. Monica gave birth to their daughter, Laney on January 12, 2013.

“After about six months, nothing was happening,” explains Monica. “We sought help, and found out that we have male factor infertility, which affects 40 percent of couples. But, we were determined to have a family.”

On January 12, 2013, the Ledbetters’ dreams of having a baby finally came true. Monica gave birth to their daughter, Laney at 12:27 p.m.

“There’s nothing like that feeling,” a teary-eyed Monica remembers. “You talk to people who have children, but there’s nothing like meeting that person you’ve been connected to for nine months. It’s joy. Absolute joy.”

Unfortunately, four months later, joy turned to panic. It was May 16, 2013. Monica and Curtis were both at work, when they received a call from Laney’s caregiver. Their daughter was having a hard time keeping liquids down, and had no energy. Something was wrong.

“The look on Laney’s face. I’ll never forget it,” says Monica. “She was only four months old, but she had a scared look in her eyes.”

The next morning, Laney wasn’t doing any better. Monica rushed her to a hospital in Lincoln. Doctors discovered Laney had a massive brain bleed. She was quickly hooked up to a ventilator and flown by helicopter to The Nebraska Medical Center.


On May 17, 2013, doctors discovered Laney had a massive brain bleed. She underwent emergency surgery at The Nebraska Medical Center to stop the bleeding. Further testing showed, Laney had no Vitamin K in her blood.

“I was in shock. I didn’t know how to act,” admits Curtis. “Monica went in the helicopter with Laney, and I drove to Omaha not knowing if I’d ever see my daughter alive again.”

When Laney arrived at the med center, Kenneth Follett, MD, chief of neurosurgery, informed the couple that their daughter needed emergency brain surgery to stop the bleeding.

“A blood clot was placing pressure on Laney’s brain, and it caused one side to shift to the other side of the head,” says Dr. Follett. “We occasionally see children with this, but what was remarkable in Laney’s case, was the sheer size and effect it was having on the brain.”

Once they took Laney to the operating room, doctors also discovered her INR (the measure of the blood’s ability to clot) was above 7, the highest INR any surgeon in the room had ever seen.

“A normal INR is 1,” explains Dr. Follett. “People who have a stroke typically have an INR of 2 or 3. Laney’s was exceptionally high, especially for an infant.”

After surgery, the next 48 hours were critical. A large team of doctors and nurses worked together, trying to figure out what caused the brain bleed in the first place.


Laney was diagnosed with Progressive Familial Intrahepatic Cholestasis Type 2. Her liver doesn’t produce and move bile the way it should, allowing Laney’s body to absorb all the nutrients it needs. In order to survive, Laney will need a liver transplant.

“With a patient like Laney, you can’t even take a minute off,” says Andrew MacFadyen, M.D., associate professor of pediatrics at the University of Nebraska Medical Center and pediatric intensivist with Children’s Specialty Physicians. “Figuring out what exactly was wrong with Laney was intriguing from an academic sense. We suspected she had either a genetic abnormality that kept her blood from clotting properly, or a severe Vitamin K deficiency.”

A blood test proved, Laney had no Vitamin K in her blood. It was the turning point that eventually led doctors to a rare diagnosis.

“Laney was diagnosed with Progressive Familial Intrahepatic Cholestasis Type 2,” explains Monica. “Her liver doesn’t produce bile and move bile the way it should, allowing Laney’s body to absorb all the nutrients it needs. Unfortunately, the lack or build-up of bile means, her liver cells are choked off and eventually start to die. In order to survive, Laney will need a liver transplant.”

While doctors still aren’t sure when Laney will need a transplant, the Ledbetters are relieved to know, a plan and team of doctors are in place.

“We’re able to live our lives each day,” says Curtis. “Right now, Laney is doing so well. Her blood tests have been great, and she keeps progressing as a little person. The doctors at the med center gave Laney a second chance. I can’t thank them enough. They kept our family together.”


“The doctors at the med center gave Laney a second chance,” says Curtis. “I can’t thank them enough. They kept our family together.”

A family that now includes a few more faces.

“Our head baseball coach, Darin Erstad, has a saying, ‘You’re either in the bubble or you’re not,'” smiles Monica. “Baseball life is a different life. You have people that you know you can open your life to. Now that bubble includes our nurses, doctors and surgeons at the med center. They helped us heal emotionally, mentally and physically for our daughter. I don’t know if we would have had that experience anywhere else… they’re in our bubble now.”