Theme: Tracheostomy

I just couldn’t see our son with the tubes. It was just the way it was.

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I just couldn’t see our son with the tubes. It was just the way it was.

The parents of a baby with SMA-1 talk about their decision making not to elect a feeding tube or trach for their son. The mom just didn’t want her son to be highly medicalized. They describe their son’s final day and deciding still not to elect the trach based on what they felt he would have wanted for his quality of life. “He was done, he was tired.” “We believe the tubes wouldn’t have benefited him, only us.”