Mum’s fight to save her daughter born with a rare birth defect

May Rose Gibney with her mum Analee
May Rose Gibney with her mum Analee
0
Have your say

“I will continue to fight for my daughter,” the simple words of a mum fighting to get her daughter vital treatment for a rare birth defect.

May Rose Gibney was given just days to live after her birth - now over a month ago.

May Rose Gibney with her mum Analee

May Rose Gibney with her mum Analee

She was born with Encephalocele - a condition in which the neural tube does not close completely during pregnancy. The result is an opening anywhere along the centre of the skull from the nose to the back of the neck, but most often at the back of the head, at the top of the head, or between the forehead and the nose.

When May Rose was born with this condition on March 9, she wasn’t expected to live longer than a matter of days, but five weeks later she is still fighting.

Her mother Analee said: “She was just over a week when they sent her home for palliative care. They said there was nothing they could do for her in the hospital so they’d sent her home to die in comfort.”

The 24-year-old from The Moy told how she fears that every time she checks on her baby could be the last.

She said: “She’s never out of my sight. Whenever I’m with her I feel like I have hope, but at night time I don’t know what I’m going to wake up to in the morning. It really is hard to sleep.”

She felt that May Rose – her only child – does not seem like she is suffering.

“She’s thriving, but you can see that she is in a bit of pain at the back of her head where the encephalocele is and she can’t open her eyes, but other than that she’s okay,” she said.

Analee said her daughter’s father lives in England and although they have split up he would stay in touch and was over to visit May Rose last weekend.

Analee said: “It was at my 20-week scan we had found out about it. We said no straight away to a termination.

“They really didn’t think she was going to make it through birth so we were all preparing for the worst. We got her baptised as soon as I gave birth. They had thought then she was going to pass away in a couple of hours, but she didn’t.”

May Rose was five weeks old on Thursday. Analee said: “I’m told it could be days, weeks or months, but I’ve been told her life is going to be very, very short.

“She’s all I can think about right now. She’s still here and I will continue to fight for my daughter.”

The mum said consultants in the Belfast Health and Social Care Trust have ruled out neurosurgery for May Rose due to the large amount of brain stems protruding outside of her skull.

She said: “I can’t thank the staff in the Belfast Health and Social Trust enough for what they have done for us. They really are a godsend from above and I will always be thankful for the service they have offered. But I am adamant that more can be done.”

To that end the family have started a fundraising push for May Rose. £1,200 has been raised to date.

Analee said: “The funds that have been raised will go towards getting second opinions on neurosurgery, and third opinions, if that’s what it’s going to take. “I can’t imagine my life without my daughter, I really am blessed to be her mother.”

Belfast Trust said it was unable to discuss any patient’s treatment or care, however clinicians are aware of May Rose’s case and will continue to provide the best possible care and advice to her family.