“She is not a vegetable. She is everything to me”, says mother of a patient with hydrocephalus

2023-05-19 20:16:03

Shortly after giving birth, Adalgisa Soares Alves, 48, received news from doctors that her daughter, Graziely Alves Régis, would only live for three months. The girl was born with congenital hydrocephalus, a condition in which fluid builds up on the baby’s head. Contrary to expectations, however, Graziely is about to turn 30 next June.

For Graziely’s mother, the prognosis of death can only be overcome due to her daughter’s determination and will to win. “She is extremely strong and very well cared for. As far as I am concerned, she will live much longer, because she is surrounded by people who love her”, says Adalgisa.

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Hydrocephalus caused Graziely’s head to grow three times the normal size. The condition, which has no cure, also caused loss of vision, loss of speech and limitation of movement for the young woman, who has been bedridden since she was born, in São Luís (MA).

The cause of the problem was a rubella that Adalgisa had during her pregnancy. “I had an ultrasound during my tenure to find out why my stomach hurt. The result showed that Grazi’s head had grown considerably and that the delivery would have to be a cesarean section”, she says.

“She is not a vegetable”

The mother says they didn’t let her see Graziely after giving birth. Later that day, Adalgisa went to the nursery to meet her daughter. “It was the only time I cried when I saw her. The doctors didn’t explain to me how her condition was, that scared me, but after that day I spent hours beside her, “she says.

The condition can be treated with surgery to insert a drain into the brain. Doctors were able to prevent the problem from progressing further. However, it was not possible to reverse the situation as the skull had already expanded.

Despite not seeing, walking or speaking, Adalgisa guarantees that her daughter understands, feels and hears. “Doctors said she has no brain and doesn’t understand anything. But how can someone without a brain smile, sketch reactions and eat without the aid of probes? She feels when we’re close and smiles when she’s hugged. She is not a vegetable. She is my daughter,” she claims.

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Neurologist Carlos Enrique Uribe, from Brasilia, informs that, according to the condition described by the mother, probably some parts of the brain were not affected, which allows the patient to perform basic movements, such as swallowing food. “Now, due to the state her head was in, the injuries do not allow for more elaborate interactions with the environment or with other people”, says Uribe.

She will continue to win

The mother was a bus conductor, but had to leave her job to dedicate herself exclusively to her daughter, as Graziely had a fragile immune system at birth. Currently, however, Adalgisa says that her daughter almost never gets sick or has seizures like the ones she had when she was a child.

“It’s a normal life. It’s our normal. She is everything to me, I bathe, dress and feed her. I do everything with a smile on my face and I wouldn’t ask for anything different. We are happy this way. She won and will continue to win, because our love is much stronger than any disease”, highlights Adalgisa.

Adalgisa has a page on Instagram where she tells her daughter’s story and posts photos of her family’s daily life. She asks for help with the necessary expenses to keep Graziely well.

Graziely birth

Graziely Alves Régis would only live about three months after being born with congenital hydrocephalus
Playback: instagram

Colored printscreen of social media post showing young woman with hydrocephalus in bed

Adalgisa, Grazi’s mother, shares her daily life on the social network

Hydrocephalus caused Grazi’s head to grow three times more than normal. The condition also caused the loss of vision, speech and limitation of the young woman’s movements.
Playback: instagram

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