Shocking images show a 29-year-old woman’s head appearing to have tripled in size due to a rare condition that kills up to half of those affected before they reach the age of three.
Graziely Alves Régis from Brazil was bedridden for years and could not speak. She recently lost her eyesight due to her head getting bigger.
Her ordeal began before she was born, when she developed hydrocephalus – an abnormal accumulation 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 responsible for the functioning of the heart and lungs.
Graziely’s mother, Adalgisa Soares Alves, 48, looks after her almost constantly and said she hopes to give her daughter all her love for many years to come.
Brazilian Graziely Alves Régis (left) with her loving mother Adalgisa Soares Alves (right)
The 29-year-old has suffered from hydrocephalus, a condition in which there is an abnormal accumulation of fluid in the brain, since birth
She is unable to walk, speak or see as her condition has continued to deteriorate and her head has grown larger
Adalgisa said she first realized something was wrong when she was eight months pregnant with Graziely after experiencing severe pain in her womb.
An ultrasound scan by doctors revealed that their unborn daughter had hydrocephalus, which affects around one in 500 babies.
Doctors estimated that their baby would only live about three months given the extent of the disease.
At birth, Graziely was dubbed a “giant baby” due to the size of her head, which has only gotten bigger over the years.
However, she has defied the medical community’s dire expectations for her longevity and will be 30 next month.
WHAT IS HYDROCEPHALUS?
Hydrocephalus is a buildup of fluid in the brain that can damage tissues.
In addition to an abnormally large head, headaches, nausea, vomiting, confusion, and blurred vision can also occur.
The cause of hydrocephalus is usually unknown, but it can be due to problems with cavities 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 involves shunt surgery, in which 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.
Left untreated, hydrocephalus can be fatal because of increased pressure on the brainstem, 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 surgically, Adalgisa claims that nothing could have been done before or immediately after Graziely was born.
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 living to adulthood.
Adalgisa said she doesn’t mind that people keep calling her daughter, who has to wear adult diapers and is bottle-fed, a “giant baby,” but said other names were cruel.
“I don’t think it’s cruel because ‘baby’ is an affectionate word, but when they call their ‘big head’ I’m sad,” she said.
“But the most important thing is that me and all our family and friends love Graziely for who she is.”
Adalgisa could not work because she looked after Graziely full-time.
She said, “Every day I take care of her, bathe her and feed her with all my love.”
“I am committed to Graziely and it makes me happy that she is well taken care of by me and our whole family.”
“I don’t work, I just take care of her — I love taking care of her and it’s a reward when I see her smile.”
“I never lose hope because I’m a woman of great faith and I always put God above everything – I pray a lot every day.”
The family, who live in São Luís in northeastern Brazil, depend on government disability payments.
However, they still face a number of challenges as it comes taking care of Graziely and making sure she is as comfortable as possible.
Graziely uses 30 packs of adult diapers per month, which costs £12.20 ($15.30) per pack, with a further £366 ($459) per month spent on other essentials.
While larger than normal when she was born, her head is now three times the size of a normal human
Due to her looks and her need to wear diapers and be bottle-fed, Graziely has been nicknamed a “giant baby”.
Adalgisa said the first sign of a problem was sudden and severe pain when she was eight months pregnant with her daughter
But Adalgisa, who has two other children, said she was keen to give Graziely all the love and care she deserved for as long as possible.
She said, “I always hope she lives.” [for] many years. She exudes positive energy and I feel a peace that overflows when someone visits her.
“I will always give her the best because she was born in my womb, she was deeply loved and desired in my womb and I will love her to the last day of her life.”
To raise awareness of her life, Adalgisa has taken to social media to update her followers and ask for support in Graziely’s care.
In a clip that 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 bless you always,” wrote another.
And another user simply said, “This lady is an amazing mom.”
But others weren’t so nice.
“I’m sorry it couldn’t be me. I couldn’t see my kid like that every day,” said one.
“Euthanasia,” added another.
In addition to an abnormally large head, other symptoms of hydrocephalus can include headache, nausea, vomiting, confusion, and blurred vision.
The mother said: “I will always give her the best because she was born in my womb, she was very loved and desired in my womb and I will love her to the last day of her life.”
Adalgisa couldn’t work because Graziely needs constant care, but added that she has no regrets: “Every day I take care of her, bathe her and feed her with all my love.”
She receives support from her extended family, pictured here is a family member helping to feed Graziely
The cause in utero is generally unknown, but it may be due to a problem with the development of the brain and skull, or to another congenital disorder.
Hydrocephalus in infants occurs in less than 1 in 1,000 births.
While hydrocephalus usually affects children, it can also occur in adults later in life as a result of a head injury, stroke, or brain tumor.
Hydrocephalus is usually treated with shunt surgery. This involves inserting a thin tube into the brain to drain excess fluid into the bloodstream, where it can be safely used by the body.
Sometimes only a single surgery is required, but other times, children may need multiple revisions as their bodies develop.
While the outcome depends on the extent of hydrocephalus, about nine out of ten children who receive treatment have no long-term impact on their life expectancy.