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When Beth Papanastasiou's daughter Bella was born, she was diagnosed with a rare degenerative genetic disorder and given 18 months to live.
In tonight's emotional Brief But Spectacular, we meet mother and daughter four years into their journey,
a journey on which Papanastasiou says palliative care is key to making the most of her daughter Bella's life.
My daughter Bella is 4-and-a-half years old now. About seven hours after she was born, she was transferred to Children's National.
After about two weeks in the NICU, they informed us that Bella had a very rare genetic disorder called Pontocerebellar hypoplasia, type 6.
And at that time, only about 12 cases had been reported in the world.
And they did let us know that, in most of those cases, the children did not live past infancy. And that was truly the start of our journey and our life with Bella.
When we first brought her home, every day, I felt like, well, today could be the day that we lose her.
The PANDA team at Children's National is the palliative care team that works with families who have children with terminal conditions or other very serious conditions.
They have been through it, and they have been through it with other families.
The hardest decisions that we make with the palliative care team are deciding at what point Bella is still fighting to be with us and at what point do we know that Bella is tired?
当贝丝・帕帕纳斯塔西奥的女儿贝拉出生时,她被诊断出患有一种罕见的退化性遗传病,并给予18个月的生存期。
在今晚饱含情感的“简短而伟大”节目中,我们在四年的旅程中遇见了这对母女,
帕帕纳斯塔西奥说,姑息治疗是充分利用女儿贝拉生命的关键。
我女儿贝拉现在4岁半了。她出生后大约7个小时,就被转到了儿童全国组织。
在新生儿重症监护病房大约两周后,他们告诉我们贝拉患有一种非常罕见的遗传性疾病,叫做脑桥小脑发育不全,6型。
当时,全世界只报告了12例。
他们没有让我们知道,多数病例都没有活过婴儿期,那真的是我们旅程和贝拉生活的开始。
当我们第一次带她回家时,每天,我都觉得,嗯,今天可能是我们失去她的日子。
国家儿童协会的PANDA小组是一个姑息性护理小组,负责为那些有晚期疾病或其他非常严重疾病的孩子的家庭提供帮助。
他们经历过,他们和其他家庭一起经历过。
我们与姑息护理团队一起做出的最艰难的决定是,在什么时候贝拉仍在努力与我们在一起,在什么时候我们才知道贝拉累了?
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