Coordinated care. Integrated care. Primary care. All terms you may have heard a lot of lately, especially from Aurora Health Care. But what do they really mean? Sometimes a story gives us the best example.
This is Veronica’s story.
Born as a preemie-sized baby, Veronica Rakel’s family had no way of knowing she had already beat the odds that were heavily stacked against her. Veronica was born with a rare chromosomal disorder called Turner Syndrome.
According to the Turner Syndrome Society of the United States’ web site, it is estimated that only 1% of fetuses with only one X chromosome survive to term and that approximately 10% of all miscarriages are due to Turner Syndrome.
“With ninety-nine percent not surviving birth, we call her our ‘one percent miracle,’” says Veronica’s grandmother, Yvonne Erdman.
The condition affects only females, with one in 2,500 girls worldwide born with this non-inherited disorder. Whereas most women have XX in each cell, girls with Turner Syndrome are born with one normal X chromosome. The other is either somehow altered or even missing. In girls like Veronica, something happens when cells are dividing during the early stages of fetal development, so some of her cells have the double X chromosomes while others only have one X.
One of the most common traits of Turner Syndrome girls and women is they are typically very short in stature. The average adult height of a woman with Turner Syndrome is 4’8” — unless they begin receiving growth hormone therapy at a young age. Her diminutive height, however, is the least of Veronica’s problems.
Multiple Health Issues
Turner Syndrome girls and women are also faced with a multitude of other very serious health issues such as:
- Conductive and sensorineural hearing loss
- Congenital heart defects
- Lymphedema (webbed neck, edema of hands and feet)
- Renal abnormalities
- Strabismus, amblyopia and ptosis
Veronica, now 9-years-old, spent the first six years of her life in and out of medical care. She was constantly sick. “She easily had more than 100 ear infections already,” Erdman said.
That’s where Aurora Advanced Healthcare primary care physician, Louis Seno, MD, comes in.
As Veronica’s primary care doctor, Dr. Seno treated her complications that ranged from the numerous ear infections to upper respiratory infections to recurrent strep and urinary tract infections, even irritable bowel syndrome with diarrhea. Dr. Seno knew there had to be something else going on with the frequency of her bouts of sickness. He ordered PET scans, CAT scans, work-ups. It all came back negative. Confused and concerned, Dr. Seno referred her to Children's Hospital of Wisconsin in hopes they would find something he was possibly missing.
They brought up the possibility of Turner Syndrome.
Unsure of what that was, Dr. Seno did research and found that Cincinnati Children’s Hospital is the main diagnostic center for Turner Syndrome. He completed a referral and the diagnosis was confirmed. After receiving an outline, he was able to better treat Veronica’s complications.
With all of the fevers and infections now under better control, Dr. Seno is in a perfect position, as Veronica’s primary care doctor, to deal with her additional Turner syndrome-related health issues. He has access to experienced specialists in virtually every area she exhibits complications from the Turner Syndrome — the most important being her heart condition. Veronica has a life-threatening heart condition known as “Long QT.” This is when the heart has a longer interval between beats, which may cause sudden fainting. In some cases, the interval may be so long that it can cause Sudden Cardiac Death, another name used to describe the condition.
With a world-renowned cardiovascular program based out of Aurora St. Luke’s Medical Center, Dr. Seno knows he has the best resources on his side if and when Veronica needs more specialized care for the “Long QT.” Additionally, Aurora Health Care has recently switched over to electronic medical records for its patients. This allows Dr. Seno to quickly make connections and share information with other specialists Veronica may need to see in the future for her general anxiety disorder, non-verbal learning disorder, asthma, insomnia, Asperger’s syndrome and dangerous thresholds to cold and pain.
Aside from the massive network of Aurora specialists to care for Veronica at Dr. Seno’s fingertips, Yvonne says Dr. Seno brings something else to Veronica’s care management - calmness.
“He knows Veronica and he knows us. That familiarity makes Veronica very comfortable when she visits with him,” say Erdmann. “I feel we can tell him anything and I think he feels the same way. It makes for much better and more productive doctor visits.”
Still, many people wish they had a doctor that simply listened to them. “Dr. Seno teaches us and he let’s you bounce ideas off him. He doesn’t tell us we’re nuts,” added Erdmann.
To sum it all up, Yvonne says when they take Veronica to see Dr. Seno, they’re going to get an answer or a direction. “We’re never left hanging.”
“I just love Dr. Seno.”