Two brave Dublin parents are fighting to give their “miracle baby girl” the best chance at life whilst raising awareness of spina bifida.
Baby T. J.’s parents were told at their 30-week scan that their unborn daughter’s brain was so badly swollen she would have no quality of life, and that she was badly deformed.
Claire McDaid from Donegal and her partner Jay Needham, who is originally from Tallaght, were told the devastating news on the day of their 30-week scan – that their baby girl was seriously deformed, and her brain was so badly swollen that she would have no quality of life.
Doctors also told the couple that they were unable to see a spine. Following this, T.J.’s parents were told by doctors that their best option would be to get an abortion in England.
“They told us that day that this is a very sick child. They told us to go home and think about going to England to terminate her,” Claire recalled.
However, determined not to give up on their unborn child, Claire and Jay held onto hope and fought hard for their baby girl. Claire, who has lived in Dublin for the last three years, carried the pregnancy to term despite the advice. She gave birth to their daughter T.J. on 7 October 2020, naming her after the couples’ grandmothers, Tina and Joan, who have both sadly passed away.
“She’s our little miracle baby,” Claire said.
Doctors predicted that baby T.J. would only live for a few hours after birth, so the couple were in the unthinkable process of planning their baby’s funeral when she was born.
However, in the face of the doctors’ warnings and advice, T.J. survived. The now-11-month-old has been diagnosed with spina bifida meningocele, a diagnosis which means she will not have the ability to move her legs.
T.J. however, could be set to defy the odds again, as the family’s “miracle princess” has already shown promising signs of movements. Her devoted parents continue to fight for her, and told Dublin Live that they want to give her the best opportunity possible in order to get as much power in her legs.
Her mum Claire told Donegal Daily Donegal Daily that there would be a “long road ahead” – but a road that is undoubtedly filled with hope.
She said: “We were told she would be paralysed from the waist down when she was born, but she can move her legs so we want to give her the best chance.”
‘We want the best for her’
Whilst T.J. has attended Temple Street Children’s Hospital for several physiotherapy sessions, she and her partner are in a race against time to find the best possible treatment for their daughter’s future mobility.
“Ireland is very behind in spina bifida equipment and treatment so we have to go abroad,” she said. “We’ve only been to the physio three times, but I’ve been doing as much as I can with her and she’s coming on fine,” the loving mum added.
“She can swing her legs and lift her foot up. Her ability is there. But in order for her to get the best chance at walking she needs more than what is available in Ireland.
“She is the happiest little lady and she deserves the best we can get for her.”
Claire told Donegal Daily that the couple are trying to raise funds for treatment abroad, and will pursue every avenue to give their daughter the best chance.
“The Johns Hopkins centre in Boston is one of the best spina bifida hospitals in the world. We hope to get her a consultation and get her as much help as possible,” Claire said.
“But even if we don’t get enough for Boston, there’s a place in Hungary. We want the best for her, but unfortunately it’s all about money, it’s awful.
“It’s a different ball game in America, but if she gets the treatment in Dublin she’ll be left in a wheelchair for the rest of her life.
“The longer she goes without treatment, the more her leg will go out of place and she will be in a wheelchair… Her hip is out, she’s struggling to pull herself up. She needs one on one special physiotherapy and she won’t get it here.
“She will be in pain if she’s left in a wheelchair, we want her to be able to dress herself, to walk and not waddle, and have her own wee life,” Claire told Dublin Live.
Proud mum Claire also spoke about the incredible joy the little girl has brought into their lives: “She’s the happiest wee girl, she reminds me of both her grannies,” she said.
The adorable baby girl will celebrate her first birthday next month.
Go Fund Me Campaign
Claire, who works as a chef in a Dublin café, says she has received wonderful support from her work colleagues who have just launched a Go Fund Me page to help raise the money needed for treatment abroad for T.J.
In an extra show of support, they have also kindly decided to donate all tips to T.J’s treatment fund.
The fundraising page reads: “We are organising this fundraiser for our colleague at work who is a brilliant part of our team and besides this, she is one of the strongest mums in the world.”
It also adds: “[Claire] was told that her best option would be to go to England to abort her precious baby…however, with all this, Claire decided not to give up on her baby and continued her pregnancy, hoping that everything will be OK. It was a very hard, stressful, and dramatic time for the couple, but they just carried on and prayed for their little angel’s survival.”
Claire said that any amount, big or small, would have a huge impact on their fundraising campaign.
“The treatment and all the special equipment for her costs about €40,000 and we really want to give her the best chance, even if people spared a fiver, it would make such a difference.”
In one comment on the public Go Fund Me page, which has already raised over €3,500, one donor wrote:
“To Claire and Jay… It is with great pleasure and with sincere admiration for you both as parents, that I offer my donation….Your amazing and courageous decision to give little T.J. the “gift of life” first and foremost and then a chance to have a quality of life is worthy of huge respect.
“You both are a wonderful example to so many and T.J. too is a wonderful example of how precious the gift of life is….The very best of luck with the fundraiser…God bless you all sincerely.”
The Go Fund Me is being shared far and wide online, in the hope that the goal can be reached so that T.J. can start treatment in either the US or Hungary. You can donate to the fundraiser here.