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Amy's Story: Palliative Care Supports Family in Managing Rare Disease

Rettenmeier Family

Debi, Amy and Dale Rettenmeier with their dog, Molly.

The Early Years

Dale and Debi Rettenmeier’s young daughters, Staci and Amy, had a typical early childhood, but when their oldest daughter Staci reached kindergarten, her teachers started noticing changes.

“The teachers were familiar with Staci and noticed she was changing,” said Debi Rettenmeier. “She was doing things that weren’t right for her age, was forgetting things she knew how to do and wasn’t staying focused.”

The Rettenmeiers thought it may have been an attention deficit disorder, so they took her to a pediatric development-behavioral specialist. After several tests, the doctor concluded Staci was experiencing something physiological and referred her to St. Luke’s for a CAT scan. She was later diagnosed with Juvenile Metachromatic Leukodystrophy (MLD). Since MLD is hereditary, Amy was also tested, and results showed she had the disease as well.

Juvenile MLD is a rare hereditary disease that causes fatty substances (sulfatides) to build up in cells, particularly in the brain and spinal cord. Symptoms include seizures and loss of control of bodily movements. The disease causes the brain and nervous system to progressively lose function and halts the child’s development. Symptoms usually begin between the ages of four and 12, and life expectancy is about 20 years after symptom onset. Staci declined quickly, and the Rettenmeiers handled almost every aspect of her care. From feeding, to purchasing home medical equipment and everything in between. Sadly, in 2010, Staci passed away at the age of 22, about 15 years after her diagnosis.

Gaining a Support System Through Palliative Care

A couple of years after Staci passed, Debi and Amy were at an appointment with former long-time UnityPoint Clinic Pediatrician, Dr. Ken Anderson. Dr. Anderson knew the Rettenmeier girls most of their lives as their pediatrician and witnessed the progression of their MLD. He referred Amy to the Palliative Care program at St. Luke’s where they worked closely with Brook Sternberg, ARNP.

“We realize patients and families struggle with serious illness, changes in health, symptom needs and navigating the healthcare system,” said Sternberg. “Our role is to help support them through the serious illness journey by helping to establish good healthcare goals, provide education in regards to any chronic disease and to improve their quality of life through good symptom management.”

Amy’s MLD progressed slower than Staci’s, and she was able to enjoy things most people experience in their daily lives. She attended school (with some special adjustments and assistance), listened to music, went to restaurants and church, and was even able to take short trips with her parents. However, there were challenges along the way, and that was when the Rettenmeiers were grateful to have the support of Palliative Care.

“I’d get questions from school about Amy. I could always consult with Palliative Care,” said Debi. “There was a time when an ultrasound of Amy’s gallbladder came back abnormal and it was suggested it be removed. However, the surgeon was hesitant to proceed because of her MLD. It was reassuring to have a consult with Palliative Care to help us make those tough decisions when things would come up.”

“Any patient or family dealing with serious illness will have questions on what to do when the disease changes or progresses,” said Sternberg. “Dale and Debi never hesitated to reach out to us for guidance. They knew we were there for them and ready to help.”

There for Amy in Her Final Months

In the last year of her life, Amy began to noticeably decline. She started having seizures, a common symptom of MLD. In November 2018, Dale and Debi rushed her to St. Luke’s Emergency Department and she was admitted to St. Luke’s Hospital.

“She was there for about four and a half days and during Amy’s stay, Dr. James Bell from St. Luke’s Palliative Care, checked in on her to provide support and a familiar face,” said Debi.

This was the common theme with the Palliative Care team, who were always there to guide, counsel or support the Rettenmeier family throughout Amy’s journey with MLD.

After Amy’s discharge from St. Luke’s, Dale and Debi met with Sternberg to discuss her treatment plan going forward. “We decided to proceed with minimal medical intervention providing comfort and care at home,” said Debi.

Fast forward to a Sunday morning in September 2019, Amy had a seizure, but this one persisted. It would stop at night but start again the following day. This continued for a few days. Dale and Debi were in frequent contact with Sternberg, who visited their home and prescribed some medication to help.

On Thursday morning, Dale was with Amy when she suddenly stopped breathing. They called 911 and EMT and police were there shortly after. They then called the Palliative Care office and Dr. Bell went over to the house to talk to the EMTs and be there for Dale and Debi.

“He was so supportive,” said Debi. “He made a very difficult situation a lot easier to handle.”

Support After the Fact

Life was different after Amy’s passing. “When Staci died, we still had Amy,” said Debi. “We had the same things to take care of, we went to the same groups. It was like a continuation of our previous life. When Amy passed, everything was totally different.”

The COVID-19 pandemic started shortly after Amy’s death, which Debi said made dealing with the grief more difficult because she couldn’t participate in church or support groups. But in summer of 2020, the Rettenmeiers were able to attend St. Luke’s Hospice Bereavement Group, which she says was a helpful resource as she and Dale were dealing with the loss of their second daughter.

Looking back, the Rettenmeiers are grateful for their Palliative Care team for the support they received throughout Amy’s journey and even now, almost two years after her passing.

“Brook still calls me. I feel like she’s a friend, rather than a medical provider,” said Debi. “I felt so close to her and Dr. Bell. I can’t say enough good things about them.”

To learn more about St. Luke’s Palliative Care, call (319) 369-7909 or visit unitypoint.org/palliativecare.