Mother cradled her ill daughter as her life ebbed away

The mother of a baby born with her brain outside her skull has told of the heartbreaking moment she cradled her dying daughter as she lost her desperate eight-month battle for life.

May Rose Gibney was born with encephalocele, an incredibly rare form of spina bifida which affects about 1 in 10,000 births every year. 

It meant her brain developed a sac-like protrusion at the back of her head.

A team at the John Ratcliffe Hospital, Oxford, performed a last-ditch eight-hour operation in August on May Rose after medics in home of Northern Ireland said they could only offer palliative care.

Analee Gibney has told of her heartache after daughter May Rose died in her arms following an eight month battle for life after being born with rare condition encephalocele

May Rose developed a sac-like protrusion at the back of her head. She underwent an eight-hour operation in August at a hospital in Oxford but died last week

May Rose developed a sac-like protrusion at the back of her head. She underwent an eight-hour operation in August at a hospital in Oxford but died last week

May Rose survived the operation but died last week. 

Grieving mother Analee, 24, said: ‘She stayed strong for me, she waited until she knew I was going to be OK and then she said goodbye.

‘I looked at her (last weekend) and I knew she wasn’t fit for it, wee love. It had become too much for her.’ 

May Rose, from Moy, Co. Armagh, had encephalocele, a form of spina bifida, which occurs when the neural tube – a structure that goes on to form the brain and spinal cord – fails to close completely during pregnancy. 

The result is an opening in the midline of the upper part of the skull, the area between the forehead and nose, or the back of the skull.

Usually encephaloceles are found right after birth, but sometimes a small encephalocele in the nose and forehead region can go undetected. 

Ms Gibney said: ‘Last Friday she opened her eyes, her eyes had always been closed, and she kept them open all weekend, I believe she was saying, this is it, it’s time, she was saying goodbye to me.

‘The last thing she saw before the slipped away was her mummy.’ 

 May Rose was nestled in her mother's arms when her face turned purple, before all the colour drained away and she stopped breathing

 May Rose was nestled in her mother’s arms when her face turned purple, before all the colour drained away and she stopped breathing

Heartbreak: Ms Gibney held her desperately ill daughter in her arms as her life ebbed away

Heartbreak: Ms Gibney held her desperately ill daughter in her arms as her life ebbed away

 She had been suffering breathing difficulties and a week ago doctors sent her home from hospital with instructions for Ms Gibney to keep her comfortable and to give her Calpol if necessary.

May Rose was nestled in her mother’s arms when her face turned purple, before all the colour drained away and she stopped breathing. 

Ms Gibney and her partner administered CPR for 20 minutes before the ambulance arrived but despite the best efforts of paramedics, May Rose died.

Ms Gibney said: ‘I can’t believe she’s gone, she completed me, I don’t think I will ever get over this. I know I haven’t accepted that it has happened because I keep looking for her. 

‘During the wake I had been outside and when I came indoors I automatically asked “how’s the child?”

‘She completed me, and now all that’s left is a massive hole in my life.’

May Rose was laid to rest after a funeral service at St Malachy’s Church, Ballymoyer in Co. Armagh. 

Ms Gibney and her partner administered CPR for 20 minutes before the ambulance arrived but despite the best efforts of paramedics, May Rose died

Ms Gibney and her partner administered CPR for 20 minutes before the ambulance arrived but despite the best efforts of paramedics, May Rose died

Ms Gibney said: 'My heart has been just ripped out in the most painful way. Rest in peace Mama's girl, I love you always my Chubs'

Ms Gibney said: ‘My heart has been just ripped out in the most painful way. Rest in peace Mama’s girl, I love you always my Chubs’

Since the death the grieving mother has visited the baby’s final resting place every day, bringing along her favourite toys. 

Ms Gibney said: ‘I sing to her and I talk to her, and I tell her everything is going to be OK. It was her who was strong, not me.

‘She was in my arms, poor pet. I’m heartbroken.’

And she expressed her gratitude for the support the family had received from well-wishers who helped raise money to pay for potentially life-saving operations.

The cash will now be used to help raise awareness for children with similar conditions.

Ms Gibney added: ‘My heart has been just ripped out in the most painful way. Rest in peace mama’s girl, I love you always my Chubs.’

WHAT IS ENCEPHALOCELE?

Encephalocele is a rare type of neural tube defect (NTD) present at birth that affects the brain. 

The neural tube is a narrow channel that folds and closes during the third and fouth weeks of pregnancy to form the brain and spinal cord. 

Encephalocele is described as a sac-like protrusion or projection of the brain and the membranes that cover it through an opening in the skull. 

Encephalocele happens when the neural tube does not close completely during pregnancy. 

The result is an opening in the midline of the upper part of the skull, the area between the forehead and nose, or the back of the skull.

Usually encephaloceles are found right after birth, but sometimes a small encephalocele in the nose and forehead region can go undetected.

How rare is it? 

Center for Disease Control and Prevention estimates that each year about 375 babies in the United States are born with encephalocele.

In other words, about 1 out of every 10,000 babies born in the United States each year will have encephalocele. 

What causes it?

There is a genetic component to the condition, meaning it often occurs among families with a history of spina bifida and anencephaly. 

Some researchers also believe that certain environmental exposures before or during pregnancy might be causes, but more research is needed. 

Can it be prevented?

Currently, there is no known way to prevent encephalocele, although steps can be taken to lower the risk.

Source: Center for Disease Control and Prevention

 

 

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