Up until a month ago we would have given MFB a billion stars. Their pediatric team is AMAZING!!! From the nurses to the doctors to the therapists, we cannot thank them enough!! They helped get our daughter from being bed bound and unable to speak, to being able to get in a power wheel chair, eat minced food, and able to talk with the nurses. Due to capacity issues she was moved to the third floor adult section where help was VERY limited. Her food often sat there while she waited on a tech to come feed her or she had to wait an hour sometimes to use toilet. She was also almost dropped every day because the nurses didn’t know how to use the ETAC and transfer her correctly. We were so disappointed in MFB those last two weeks, that we allowed them to discharge her. Now we have no help and a daughter with 100% care needs. We cannot believe we were even able to take her home without home health care or therapy being scheduled. We will always love the pediatrics unit and the love and care they provided for her but your third floor and case managers need to be at the same level of care.
I was referred to MFB physical therapists for hypermobility and was paired with the hypermobility experts, Adam and Maggie. I had gone from being an endurance athlete to not being able to get off the sofa after my second pregnancy. They were both so kind, helped me understand my body, and got me back to chasing after kids again. I truly don’t know if anyone else in the state is doing what they are doing. Having someone who understands hypermobile bodies and the delicate process of getting us moving without injuring us is priceless. I’m so grateful to both of them.
I would never recommend Mary Free Bed's outpatient pain rehabilitation program based on our family's experience.
My daughter, who has hypermobile Ehlers-Danlos syndrome (hEDS), entered the program after being promised it would get her life back. We were told she would be back to cheer, running, and feeling great by the end of the summer. Instead, her condition deteriorated dramatically.
One of the most concerning aspects of the program was that my daughter came away believing she should not talk about her pain or symptoms beyond briefly acknowledging them. She was instructed not to focus on them, and as a result, she stopped telling me how sick she was becoming. She didn't tell me she had stopped eating, that she was vomiting every night, or that her abdominal pain had become unbearable. As her parent, I was unintentionally kept in the dark while her condition continued to worsen. By the time we realized how critically ill she had become, she required repeated hospitalizations, feeding tubes, TPN through a central line, and treatment for a blood clot. It is terrifying to know that my child became so critically ill while believing she shouldn't fully communicate her symptoms. No parent should have to learn after the fact that their child was hiding severe symptoms because they believed they weren't supposed to talk about them.
The most disappointing part of our experience was that no one seemed willing to truly listen. My daughter repeatedly told her physical therapist, psychologist, and PM&R physician that her pain was getting worse, she was becoming extremely fatigued, she could barely walk, and something didn't feel right. These concerns were repeatedly brushed aside with comments like, "Sometimes things get worse before they get better." Rather than investigating why a medically complex child was declining so rapidly, it felt as though nearly every symptom was attributed to her FND while her other diagnosed conditions—including hEDS and significant gastrointestinal disease—were overlooked.
Within weeks, she suffered a nine-hour episode of non-epileptic seizures, lost the ability to walk, required a wheelchair, multiple lengthy hospitalizations, tube feeding, TPN through a PICC line, and later developed a blood clot. Even after this, we were told not to bring her wheelchair back to therapy because she "wouldn't need it."
During one hospitalization, Mary Free Bed declined inpatient rehabilitation. During another, we were told she had been accepted, signed paperwork, and prepared for transfer, only to be told hours later that they had changed their minds because she had walked a short distance during physical therapy.
Since leaving their program and seeking treatment through other providers, her pain has become much better controlled, her FND symptoms have significantly improved, and she is finally making progress.
I cannot say with certainty that a different course of treatment would have changed every outcome. What I can say is that I believe my daughter was telling her care team that she was getting sicker, and they didn't truly hear her. Families deserve providers who listen when a child says they are getting worse instead of assuming every symptom fits one diagnosis. That failure to listen is what will stay with our family the most, and it is why I cannot recommend this program.
They have taken great care of my nephew, but there have been some major unethical oversights. Major invasions of privacy and lack of communication on many different levels, and lack of consideration and bedside manner for my family’s belongings. Things were lost, moved and displaced without a text or even a simple good bye. You know that it’s morally bankrupt when multiple staff members express their sympathy for how my family has been treated. While we continue to be eternally grateful for man staff members and they love and care there are serious lapses in judgement, and communication that are simple unacceptable. We will be following up.
I feel like the office took the time to understand my injury and my needs, was able to put together a really good exercise plan, specific to my chronic condition. It has been around 8 months since finishing the program, and I feel stronger than I have in about 10 years.
