Mariah Mumpower is a ten year old little girl with cystic fibrosis (CF) who was taken away from her mother by the Oregon Department of Children and Families (DCF) in September 2015 during a routine visit to the CF clinic in Portland, Oregon.
The shelter order allegedly claimed that her mother, Rhonda Mumpower, was neglecting her child because she was underweight.
The seizure of her daughter also occurred shortly after she complained about the services at Doernbecher Children’s Hospital CF clinic in Portland, and stated that she wanted to find a different clinic to take her daughter to for medical services.
Mariah was also asked to participate in a Harvard University backed research study on her rare form of cystic fibrosis.
Living with Cystic Fibrosis
Cystic fibrosis is a rare genetic disease that is inherited when both parents have the CF recessive mutation which produces a faulty protein. 30,000 people in the United States are afflicted with it, according to the Cystic Fibrosis Foundation.
They have 70 chapters across the country with care centers in every state where families go for medical care as well as emotional support. CF is considered life threatening.
CF patients produce a thick, sticky mucus, instead of a slippery thinner mucus, as in healthy people. The thick mucus can interfere with absorption of nutrients in the digestive track and by preventing the release of digestive enzymes in the pancreas. The thick mucus that gets overproduced in CF patients, can be a rich breeding ground for bacteria especially in the soft tissue of the lungs where the risk for infection is chronic. (Source.)
Life with cystic fibrosis requires special care on a daily basis because of the overproduction of thick mucus. According to Rhonda, the CF center in her community also requires frequent check-ups with CF experts.
Mariah was born in 2005 and was diagnosed with CF at six months old. Mariah has to have check-ups every three months in addition to her daily care. Her mother Rhonda Mumpower, took Mariah to a routine check up at Doernbecher Children’s Hospital’s CF clinic, which is part of the Oregon Health and Science University (OHSU), in Portland, despite wanting to find a different clinic.
She was frustrated with the decline of service in terms of wait times, negotiating appointment times and the ever increasing bureaucracy. She expressed her displeasure and let the staff know she was going to find a different clinic to take Mariah to. Despite her complaints she was convinced by staff to come back again.
Mariah Recruited for Research Study on her Rare Disease
According to the CF Foundation, federal funding is not available for CF research because there are only 30,000 people who suffer with the disease in the United States, and only 70,000 people world-wide.
The Cystic Fibrosis Foundation primarily does fundraising for research on treatments and cures. They award funding to institutions across the country including OHSU in Portland.
“The life expectancy of CF patients has gone from a very high childhood mortality to patients now living into their 30s and even 40s since the disease was discovered in 1955.”
The foundation also says that CF is a disease that primarily affects people of Caucasian descent.
For Mariah, being half African American, to have CF is extremely rare. Rhonda reports that in 2013 when she was asked to allow Mariah to participate in a Harvard University backed research study which required putting Mariah in a registry of CF patients from across the country, she trusted them and the staff was very excited when she agreed.
Rhonda believes her race was the main reason for the excitement. The first study Mariah was a part of required a simple DNA swab from her mouth.
In September 2015, on the day that DCF took Mariah into their custody, there was a form that Rhonda was asked to sign. She was told that it was simply a form to keep Mariah in the CF registry, but in fact it was a form giving consent for Mariah to participate in another study. The “registry is a permanent registry of health information” and requires permission for the information to be shared. The document states that, “authorization for disclosure of your health information to the registry will be effective as long as the patient registry information is collected.”
Rhonda questions the timing of the document signature request as it was just after her complaint and right before they took Mariah into state custody.
Their caseworker talked with Rhonda before the last clinic visit about her housing situation. Rhonda was in need of housing and the social worker asked Rhonda if they could help her with that.
Instead of helping Rhonda to get housing for herself and Mariah, they took custody of Mariah and gave Rhonda $1100 to pay for her storage.
Mother Questions Practices of CF Center
During that same visit, Mariah was given a breathing test in the clinic which is standard practice, but according to Rhonda, the pulmonary tech did it incorrectly making the results seem worse than they really were.
Rhonda informed the tech that she did not do it long enough and asked that she do it again. The social worker and clinic staff told Rhonda that an inpatient stay was necessary due to the results of the breathing test. Rhonda insisted that they do the test again. According to Rhonda, she knew that the test was done incorrectly, that they didn’t do it long enough and that their insistence on inpatient care was unnecessary.
According to the CF Foundation, CF centers provide patients with a team of support people. They have pediatricians, social workers and pulmonary specialists.
Rhonda reported that the social worker on Mariah’s team, who works at the CF center at Doernbecher Children’s Hospital in Oregon, is not well liked by many families. She is another cause of dissatisfaction among parents of patients there.
In January of 2016 the research branch of the Doernbecher Children’s Hospital sent out a letter to patients informing them of improvements being implemented to improve their system. The letter addresses long wait times, promising that they will go down and states that making appointments will become easier.
Rhonda believes that this is indicative of many complaints by patients and their parents.
A shelter order filed with the dependency court in Clackamas County, Oregon, cited Rhonda as neglecting Mariah because she is underweight. In fact most CF patients are underweight due to malnourishment caused by the disease. As a result of her low weight Mariah has had a prescription for Pediasure.
Rhonda doesn’t understand why they would accuse her of neglecting her daughter for being underweight especially when, according to Rhonda, they did not give Mariah her prescribed Pediasure until she had been in their care for at least two weeks.
Malnutrition Common with Cystic Fibrosis
Because the body cannot digest essential nutrients in food (particularly fat), it is often difficult to gain weight and CF infants may struggle to put on weight and grow. The medical term for not consuming sufficient nutrients is “malnutrition.”
Adults with CF often find it difficult to gain and maintain weight. In children with CF, this can result in delayed puberty if they are severely underweight. (Source. See also Mayo Clinic definition.)
Portland Benefits from Research Funds for Rare Diseases
According to a report titled, “The Economic Impacts of Oregon Health and Science University (OHSU),” Portland, Oregon, benefits greatly economically from the research of the university.
OHSU conducts research on cystic fibrosis, among many other diseases. OHSU is awarded millions of dollars for their research by many different resources including foundations devoted to different diseases.
OHSU contributes immensely to the overall economy of Portland, according to an impact report, dated 2009. Millions of dollars and thousands of jobs would not exist if it were not for the OHSU.
A Mother’s Desperate Effort to get her Daughter Back
Rhonda’s case plan requires several steps that she must complete in order to be able to get Mariah back.
One task is finding housing which she claims to be nearly impossible because she now has a false report of “eviction” reported to the credit reporting companies.
Rhonda is doing everything DCF asks of her, but in the meantime she reports that Mariah is sad, clings to her during supervised visits, and has dark circles under her eyes.
The caseworker supervising the visits told Rhonda not to let Mariah cling to her. Rhonda has made efforts to find additional people who can be approved to supervise visits in order to be allowed more frequent visits, but it is up to the state to conduct background checks and approve them.
In the meantime, Mariah has been moved from her school to a school across town that is closer to the foster parent’s home without first informing Rhonda about the change. Rhonda’s family members have been eliminated as possible foster parents by the state due to their loyalty to Rhonda. The state has been contacting Mariah’s father’s family, out of state, despite the fact that there has never been any contact with any of them.
Mariah Suffering in Foster Care
Mariah has an emotional support dog named Klowie that she has had her whole life. Klowie now growls at her when she sees her.
In a letter written by the medical social worker in the case, “a companion dog is extremely recommended by professional experts.” Scientific research studies have proven that having a companion animal, particularly a dog, help patients “adjust better to serious illness.” They help with lessening pain, coping with stress and have proven to shorten a patient’s hospital stays.
Mariah is not allowed to have her companion dog in foster care.
Wednesday February 10, 2016 will be the next hearing in Rhonda’s case. Mariah wants to go home to her mom. Rhonda is cooperating with DCF in hopes that they will follow through with their plan to reunify them.
How you can Help
You can contact the Mumpower’s elected representatives and ask them to intervene.
Senator Rod Monroe
Address: 900 Court St NE, S-409 Salem, OR, 97301
Representative Jeff Reardon
Address: 900 Court St NE, Salem, OR, 97301
District: Congressional District 5
Address: 544 Ferry Street SE, Ste 2, Salem, OR 97301