Why Foster Parents Need a Say in Medical Decisions
Diseases
Rare Disease
Issues and Challenges
Anna has encountered: Rare / Underserved Disease, Caregiving
My Story
My husband and I were therapeutic foster parents for 18 years. We took in children with severe special needs who required complex medical care. Over the years, we cared for children with hemophilia, shaken baby syndrome, fetal alcohol syndrome, PKU, diabetes, metachromatic leukodystrophy, drug-addicted babies, cerebral palsy, and many others. Our lives were never dull.
We became true advocates for the children in our care. We advocated for their birth parents to get their acts together and gain custody of their children when they showed a true desire to better themselves. We advocated for their school district to provide necessary accommodations for their education. We advocated for their medical care so that they received the best treatment options available. We advocated for their well-being before the caseworkers and judges when it was apparent their birth parents weren’t able to step up, and it was time to terminate parental rights and allow us the opportunity to adopt them into our lives forever. Whatever their needs, we advocated for them.
We had a foster daughter named Jade in our home for two years. Jade had a medical condition known as metachromatic leukodystrophy. This was a rare genetic disorder that caused a buildup of fat in the nerve cells, particularly in the brain and spinal cord. Jade went from being able to walk while holding our hands to being confined to a wheelchair, and she lost the ability to sit up without assistance. She had already lost the coordination to use silverware before being placed in our home, but she could still feed herself finger foods and drink out of a sippy cup. After a few months, she was forced to use an NG tube (feeding tube through the nose), and then shortly after, a permanent G-tube (feeding tube into her stomach) was placed. She would aspirate whenever she tried to eat or drink anything by mouth. She began having severe pain and seizures that would cause her entire body to tense up, and she’d scream in pain. It was a horrible, debilitating condition with no treatment options at that time.
As her foster parents, we weren’t allowed to make any medical decisions for her care; we could only love her and care for her to the best of our ability. The foster care system oversaw all medical decisions. Everything had to be approved by the judge. This was difficult because, as Jade’s prognosis progressed, we disagreed with the care plan put in place, but we had no legal standing.
Jade continued to deteriorate as time went on. She wasn’t the only child we had to care for in our home at that time. We had another foster son with severe cerebral palsy who required 24/7 care, as well as a foster daughter and six children that we had adopted (two of whom had severe hemophilia, one with fetal alcohol syndrome, and one with severe bipolar disorder). Our home was in total chaos – even with the two nurses who came in during the day to help with Jade and our foster son. One afternoon, Jade had a major stroke. We immediately called the caseworker, and the nurse called the hospice doctor. The caseworker made the executive call that Jade was done and that we were to admit her into the hospital for end-of-care services. We were told to take her to the local children’s hospital and drop her off. Our duty as foster parents was complete…
This little girl had been in our care for two years. We had loved her, cared for her, watched her deteriorate, and had been the only constant support she had in her life, and now that she was nearing the end, the caseworker wanted us to just leave her alone in the hospital. No. Just no. The caseworker mentioned that we wouldn’t get paid if she were inpatient because the state would only pay one service provider. At that point, it wasn’t about the money. It was about that little girl being all alone in the hospital at the end of her life. We refused to leave her side and stayed at the hospital with her.
The doctor informed us that it wouldn’t be a quick process, that basically, they would withhold food and only provide her with meds to keep her comfortable, and she would pass peacefully once her body was ready. My husband pleaded with them to try to prolong her life. Yes, we knew there were no treatment options available, but was she really at the point of no return? But again, we had no legal standing; we were just the foster parents, and DCS had made up their minds that her time was up.
It took 17 days for Jade’s body to finally give up and peacefully pass. Seventeen days of watching her waste away to nothing more than a skeleton. Seventeen days of wondering if the doctors and caseworkers were making the right decision. Seventeen days of wondering if there was anything we could have done differently to prevent this. Can you imagine if we had followed the caseworker’s orders and left her alone in the hospital for the 17 days it took for her body to pass with just nurses and doctors to watch over her? That’s a long time for a child to go without loving care, even if they are at the end of life and more medically drugged than awake.
As I stated earlier, we were foster parents for 18 years. After Jade died, we lost our faith in the foster care system. We refused to take in any other placements and only kept our long-term foster son with cerebral palsy. We ended up adopting him as well and closing our license a few years later. The moral of this story is that foster parents need more legal rights when it comes to medical decisions regarding long-term foster children in their care. Our opinions should be included in decisions made on behalf of the children that we have medically cared for. There is still a huge need for medically trained foster parents, but until policies change, we never want to witness another child go through the horror that Jade went through and not have the ability to be a voice of reason again.
My Motivation and Inspiration
My motivation is to encourage policy change that will allow foster parents a voice in the treatment and care of their medically challenged foster children. We provide daily care and support, attend all medical appointments, and know more about the disorders than many of the caseworkers, and yet we have less say in the big picture of the child's care plan.
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