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, pushed to 30 weeks due to a scheduling error, Claire’s baby was diagnosed with spina bifida.
“Claire was told that day the terrible news, which she and her partner will never forget, that the baby is badly deformed, will not have quality of life because his brain is so swollen , and they cannot see the spine,” according to a GoFundMe page written by a family friend. “She was told her best option was to go to England to abort her precious baby. The doctors said she only had a few hours to live.”
The doctors, in fact, had no doubts about the situation of her baby.
“When I went for my 30 week scan, they told me that his head was swollen, and that they couldn’t find any life inside his brain, that he was a very sick baby, that there was no hope for to him,” said Claire. People in Dublin. “We were told that he would spend 95 percent of his life in a wheelchair and that he would have brain problems and memory loss problems. They do not know. They have no idea. 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 forms the brain and spine – does not close completely, leading to the spine and spinal cord not formed correctly. There are treatments available for the condition, both in the form of amazing prenatal surgeryas well as surgery and treatment after the baby is born.
Claire refused to give up her preborn baby, and TJ – Tina Joan, named after her grandmothers – was born on October 7, 2020. Two days later, she underwent surgery to close her meningocele, or sac of spinal fluid. which bulges in the spine. He also has a condition called hydrocephalus, or fluid on the brain, which requires a transfusion to drain the excess fluid. But TJ is already defying the odds, far from the bleak picture his doctors have painted.
Now, at two years old, he is doing great, albeit struggling with his legs and feet due to his condition, as well as some gross motor development. He has challenges, but far from what the doctors predicted. His parents knew he was a miracle.
“He was absolutely perfect,” said his father, Jay Needham Echo.ie. “We didn’t know what to expect when he was born. Claire was told not to buy any baby clothes. We were told that babies like TJ only live an hour or two after birth. But when he was born, he adapted very well outside the womb. He is incredible. He is such a fighter.”
TJ’s next fight is the walk, and Claire is determined to seize the opportunity for him. Friends and family from all over the country came together to raise the necessary funds to give her little girl a chance to walk. Claire has held many community fundraisers, including one where TJ’s grandfather and cousins jump from a plane to raise money for the necessary surgery and physical therapy to send her daughter to the Pető Institute in Budapest, where she could receive the intense physical therapy unavailable to her in Ireland.
His parents are already excited about the movement he shouldn’t be doing because of his condition – crawling, sitting, kicking his legs a little, even putting his paws in his mouth. “She’s the happiest little girl, and she deserves the best we can get for her,” Claire said SPUC.
