Shocking footage shows a 29-year-old woman’s head apparently tripling in size from a rare condition that kills up to half of patients before they turn three.
Graziely Alves Régis, from Brazil, has been bedridden and unable to speak for years and recently lost her sight as her head continued to grow.
Her ordeal began before she was born and developed hydrocephalus — an abnormal buildup of fluid around the brain — in the womb.
The resulting pressure can damage internal tissues and distort the shape of the skull. It can even be fatal if the pressure damages parts of the brain that keep the heart and lungs working.
Graziely’s mother, Adalgisa Soares Alves, 48, cares for her almost constantly and said she hopes to give her daughter all her love for many years to come.
Brazilian woman Graziely Alves Régis (left) with her loving mother Adalgisa Soares Alves (right)
The 29-year-old has suffered from hydrocephalus since birth, a condition in which there is an abnormal accumulation of fluid in the brain.
She can’t walk, talk or see because her condition is getting worse and her head is getting bigger
Adalgisa said she first knew something was wrong when she was eight months pregnant with Graziely after experiencing severe pain in her uterus.
An ultrasound scan by medics revealed that her unborn daughter had hydrocephalus, which affects about one in 500 babies.
Doctors estimated that given the extent of the condition, her baby would only live about three months.
When Graziely was born, she was referred to as a “giant baby” because of the size of her head, which has gotten even bigger over the years.
However, she has defied the medics’ grim expectations about her lifespan and turns 30 next month.
WHAT IS HYDROCEPHALUS?
Hydrocephalus is a buildup of fluid in the brain, which can damage tissue.
Aside from an abnormally large head, other symptoms can include headaches, nausea, vomiting, confusion, and vision problems.
The cause of hydrocephalus is usually unknown, but it may be due to problems with holes in the brain or an underlying health problem that affects blood flow, such as heart disease.
It can also be acquired from damage to the brain from a head injury, stroke, or tumor.
The treatment is shunt surgery, where a thin tube is implanted in the brain to drain excess fluid to another part of the body where it can be absorbed into the bloodstream.
If left untreated, hydrocephalus can be fatal due to increased pressure compressing the brain stem, which is responsible for regulating heart rate and breathing.
A patient’s prognosis after surgery depends on their age and general health.
Source: Brain and Spine Foundation
While hydrocephalus can usually be treated with surgery, Adalgisa claims nothing could have been done before or immediately after Graziely’s birth.
If left untreated, as in Graziely’s case, hydrocephalus kills about 50 percent of children before the age of three, with only about one in five surviving to adulthood.
Adalgisa said she doesn’t mind people continuing to call her daughter, who must use adult diapers and bottle-fed, a “giant baby,” but said other names were cruel.
“I don’t think it’s cruel because ‘baby’ is a loving word, but when they call her ‘big head’ I feel sad,” she said.
“But most importantly, I, and all our family and friends, love Graziely just the way she is.”
Adalgisa has been unable to work as she acted as Graziely’s full-time caretaker.
She said, ‘Every day I take care of her, bathe her and feed her with all my love.
“I am devoted to Graziely and it makes me happy to see her being well taken care of, from me and our entire family.
‘I don’t work, I just take care of her – I’m happy to take care of her and it’s satisfying to see her smile.
“I never lose hope because I am a woman of great faith and I always put God above everything – I pray a lot every day.”
The family, which lives in São Luís in northeastern Brazil, depends on government disability benefits.
However, they still face some challenges due to the expense of taking care of Graziely and keeping her as comfortable as possible.
Per month, Graziely uses 30 packs of adult diapers, costing £12.20 ($15.30) per pack, while a further £366 ($459) per month is spent on other necessities.
Although she was already larger than normal when she was born, her head is now three times the size of a normal person’s
Graziely has been called a “giant baby” because of her looks and the need to wear diapers and be bottle-fed
Adalgisa said the first sign of a problem was a sudden and intense pain when she was eight months pregnant with her daughter
But Adalgisa, who has two other children, said she was committed to giving Graziely all the love and care she deserved for as long as possible.
She said, “I always hope she lives [for] many years. She transmits positive energy and I feel a peace that overflows when someone visits her.
“I will always give her the best, because she was born from my womb, she was much loved and desired in my womb, and I will love her until the last day of her life.”
In an effort to raise awareness about their lives, Adalgisa has taken to social media to update her followers and ask for support for Graziely’s care.
In one clip, which has been viewed more than 110,000 times, Graziely’s mother is shown giving her a bottle.
“God bless you so much,” said one viewer.
“You are an angel, beautiful soul, may God always bless you,” another wrote.
And another user simply said, “This lady is a great mom.”
But others were not so nice.
“I’m sorry it couldn’t be me. I couldn’t see my child like this every day,” said one.
“Euthanasia,” someone else added.
Aside from an abnormally large head, other symptoms of hydrocephalus can include headaches, nausea, vomiting, confusion, and vision problems.
The mother said, “I will always give her the best, for she was born from my womb, she was much loved and desired in my womb, and I will love her until the last day of her life.”
Adalgisa has not been able to work because Graziely needs constant care, but added that she does not regret this: “Every day I take care of her, bathe her and feed her with all my love
She does receive support from her wider family, pictured here a relative helps feed Graziely
The cause in the womb is generally unknown, but it may be due to a problem with brain and skull development or due to another congenital condition.
Hydrocephalus in babies occurs in less than one birth in a thousand.
While it usually affects children, hydrocephalus can also develop in adults later in life as a result of a head injury, stroke, or brain tumor.
Hydrocephalus is usually treated through shunt surgery, a procedure in which a thin tube is inserted into the brain to drain excess fluid into the bloodstream where the body can safely process it.
Sometimes only a single surgery is needed, but in other cases, children may need multiple revisions as their bodies develop.
Although the outcome depends on the degree of hydrocephalus, about nine out of ten children who receive treatment have no long-term effect on their life expectancy.