A baby girl from Co Armagh who was given just days to live after being born with a rare birth defect continues to fight for her life five weeks on.
Her family say Belfast Trust has ruled out neurosurgery to treat May Rose Gibney who was born with encephalocele, but they too have vowed to keep fighting.
Talking to the News Letter, 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 yesterday. 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 Co Armagh 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 patients 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.
Encephalocele happens when the neural tube does not close completely during pregnancy.
The result is an opening along the centre of the skull – most often at the back of the head – where part of the brain and the membranes protrude in a sac.
Analee said: “The sac would is at the back of May Rose’s head, in the middle, going down by her shoulders. It sounds scary but it’s covered by a lot of skin.”
She added: “I know it’s a very rare condition but when May Rose was first diagnosed I was quite disheartened by the lack of information and statistics available. That’s why I have spoken out.”