One of the major physical challenges that people with Williams syndrome tend to deal with are heart and blood vessel issues, often requiring surgery. Michelle was very blessed to have escaped the heart problems and has not had to have any type of heart or vascular surgery.
However, on a routine visit to her primary care doctor, her doctor noticed in her records that she’d had a CT scan weeks earlier, and she reviewed the results. Then she said, “I see Michelle has a vascular growth on her right kidney. Tell me about that. What was done for it? What did the doctor say?”
I said, “Vascular growth? This is the first I’m hearing about it. I have no idea if anything was done about it.”
Michelle had been complaining of chronic nausea and pain in her lower abdomen, so that’s what we were discussing with her doctor on that particular visit. Dr. Shahid put in a referral for Michelle to visit a gynecologist about the pain which Michelle called “cramps” and a vascular surgeon about the growth.
The GYN doctor ordered an ultrasound, which also showed the vascular growth. The ultrasound technician told me that the vascular growth was mentioned in her records for the first time in 2016. At that time, Michelle was living in a group home. I wondered why I wasn’t told. In February, 2017, Michelle moved into her own apartment, where she was cared for by an agency. No one ever mentioned that growth, but maybe the agency didn’t know.
On January 8, 2021, I brought Michelle home permanently. But only three months later, she was hospitalized for a week while the hospital ran test after test to find out why she couldn’t hold anything down. They did x-rays and CT scans. Surely, they had to have seen that vascular growth, but no one mentioned it. I suspect, they figured that since it was first discovered in 2016, that I already knew about it. Maybe the agency didn’t know for the same reason.
The gynecologist couldn’t find a reason for Michelle to be cramping, but the vascular surgeon noted that she was severely constipated. I knew what to do for constipation. And since the vascular growth was never the purpose for the CT scan, it wasn’t in focus, so Dr. Rishi couldn’t read it very well. Therefore, he ordered another one. This picture came out crystal clear.
The vascular growth wasn’t obstructing the flow of blood to her kidney and hadn’t grown much (if at all) since it was first discovered in 2016. Of course, with vascular issues being a part of Williams syndrome, I wondered how long that thing had been growing on her kidney.
Dr. Rishi recommended a procedure called embolism. They would fill the shell of the vascular growth with an embolism fluid and the thing would shrivel up and die. We rescheduled with him for three months out. That would give us time to clear up her constipation. We still have another six weeks before that appointment.