Tagged with "Down syndrome | Downs With Ups"
Feb 4, 2022 - Christmas    4 Comments

A Huge Decision

After a week and a bit in the Austin Hospital, Jane and I were transferred to the Donvale Rehabilitation Hospital. I was reassured by one of the doctors there that the information is still in Jane’s brain, it just needs to find a new pathway to ‘get out’.

While in Donvale, we often went back to the Austin for more tests and this is when we met Jeremy, who has become Jane’s neurosurgeon. Jeremy, (who speaks very quickly), is somewhat of an expert in moya moya cases for although they are rare, Jeremy managed patients from all over Canada when he worked there for many years, and he also takes on many cases here in Australia. Phew. We have someone who knows how to potentially improve Jane’s condition.

At our first meeting with Jeremy, he explained a possible surgical intervention to help Jane and outlined the risks. Back at Donvale having dinner, I asked Jane what she thought about surgery – it is after all her decision.

I addressed some of her concerns and explained that she would go into a deep sleep so she wouldn’t feel anything during the surgery. We talked about where her hair would be shaved and that all the doctors and nurses would be very careful and make sure she was looked after.

To help her understand the procedure, I drew this rudimentary picture of the operation Jeremy would perform. I enlisted Jane’s help in labelling and spelling certain aspects of the diagram.

Moya Moya Surgery

There are two procedures Jeremy hopes to perform, both of which require the removal of part of a secondary artery from just under Jane’s scalp. The first is an indirect bypass, which means a piece of the secondary artery is sutured into Jane’s carotid arteries, thereby increasing blood supply. The second is an overlay, in which he will overlay a piece of artery over the area of the stroke, in the hope it will create additional vessels.

“So, if you have the surgery, you probably won’t have another stroke. But if you don’t have the surgery, then you will have more strokes.”

“Please know my gorgeous girl, that whatever you decide, I’ll be here to support you. There is no right or wrong decision.”

“I don’t want to have another stroke,” Jane replied. “But I’m scared.” I let her sit with her thoughts for a while and then she surprised me. “I think I’ll sleep on it before I decide what to do.” Such maturity and caution, things I don’t believe I’ve seen in my daughter to such an extent.

~

“I’ve made my decision,” she said to me the next morning as our breakfast was being placed on our hospital tables.

“Yes,” I replied, hoping to secret my anxiety under a veil of even-temper. “What have you decided?”

With great solemnity she replied, “I’m going to have the operation…to my brain.”

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