Parents given no hope for baby girl with spina bifida chose life: ‘She’s incredible’

Claire McDaid of Letterkenny, Ireland, was given shocking news when she went in for her 25-week ultrasound for her preborn daughter. At the appointment, which had been pushed to 30 weeks due to a scheduling error, Claire’s baby was diagnosed with spina bifida. 

“Claire was told on that day terrible news, which she and her partner will never forget, that the baby is badly deformed, will have no quality of life because her brain was badly swollen, and they could not see the spine,” according to a GoFundMe page written by a friend of the family. “She was told that her best option would be to go to England to abort her precious baby. The doctors had said that she will live only a few hours.” 

Doctors, in fact, were unequivocal about her baby’s situation.

“When I went to my 30 week scan they told me that her head was swollen, and that they didn’t see any life inside her brain, that she was a very sick baby, that there was no hope for her,” Claire told Dublin People. “We were told she would spend 95 per cent of her life in a wheelchair and that she’ll have brain problems and memory loss problems. They didn’t know. They hadn’t a clue. Her vision and everything is perfect, they just gave us a worst case scenario,” she told the Irish Sun. 

Spina bifida is a type of neural tube defect (NTD) that occurs when a developing preborn baby’s neural tube – what develops into the brain and spine – doesn’t close all the way, leading to the spine and spinal cord not developing correctly. There are treatments available for the condition, both in the form of amazing prenatal surgery, as well as surgery and treatments once the baby has been born. 

Claire refused to give up on her preborn baby, and TJ – Tina Joan, named after her grandmothers – was born on October 7, 2020. Two days later she had surgery to close her meningocele, or sac of spinal fluid bulging through the spine. She also had a condition called hydrocephalus, or fluid on the brain, requiring a shunt to drain the excess fluid. But TJ is already defying the odds, far from the bleak picture painted by her doctors. 

Now, at two years old, she is doing exceptionally well, though struggling with her legs and her feet due to her condition, as well as some gross motor development. She has challenges, but a far cry from what doctors predicted. Her parents know she is a miracle.

“She’s absolutely perfect,” her dad, Jay Needham, told Echo.ie. “We didn’t know what to expect when she was born. Claire was told not to buy any baby clothes. We’d been told that babies like TJ only survive for an hour or two after birth. But when she was born, she adapted really well to being out of the womb. She’s incredible. She’s such a fighter.” 

TJ’s next battle is to walk, and Claire is determined to seize the opportunity for her. Friends and family from all over the country have come together to raise the necessary funds to give her little girl the opportunity to walk. Claire has held many community fundraisers, including one in which TJ’s grandfather and cousins jumped out of an airplane to raise the money for the necessary surgery and physical therapy to send her daughter to the Pető Institute in Budapest, where she can receive the intense physical therapy that isn’t available to her in Ireland. 

Her parents are already thrilled with the movement she was never supposed to have on account of her condition – crawling, sitting up, kicking her legs a little, even putting her feet in her mouth. “She is the happiest little lady, and she deserves the best we can get for her,” Claire told SPUC. 

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