Lacey Grace Bower’s parents, Michelle and Michael Bower, were urged to terminate her pregnancy when they received her diagnosis after her 20-week scan.
But they ignored the advice and the youngster is already defying her prognosis at just 19 months old - even learning to manoeuvre a custom tiny wheelchair.
Michelle, 37, from West Lafayette, Indiana, said: “We met with the doctor right after the scan and heard the words ‘neural tube defect’, ‘lemon-shaped head’ and ‘spina bifida’ to describe our daughter for the first time.
“We were at a complete and total loss. The tears didn’t stop flowing for a couple of days.”
After trying for about two years to start a family, Michelle found out she was pregnant with Lacey on December 5, 2019 just before she left for a birthday party.
“I took a test to determine whether or not I could have a few cocktails at the party,” she said.
“Michael lifted me up in a hug and spun me around. We were beyond thrilled.”
But almost four months later, at her 20-week ultrasound scan, the happy couple received devastating news.
Dad Michael, 42, said: "They noticed Lacey had a lemon-shaped head which means that her spine lesion was pulling on her brainstem and making her head mis-shaped."
There was also a large bubble on a part of her spine.
The spinal canal of a baby with spina bifida does not close completely when developing, leaving the spinal cord exposed from an early stage in pregnancy.
This results in changes to the brain, as well as severe trauma-related injuries to the nerves on the lower half of the body.
Michelle said: “We had just found out that we were having a girl the day before. We wanted a girl. We went from the highest of highs to the lowest of lows in under 24 hours.
“It was a complete and utter nightmare, but we still had hope.
“We hoped it was the less severe form of the condition until we got more testing done.”
They were referred to a foetal medicine doctor who told them their daughter had a neural tube defect and a lemon-shaped head, indicating her condition was severe.
They were strongly advised to terminate the pregnancy.
Michelle said: “I cried my eyes out at the mention of it. Through my tears I said ‘that is not an option, I already love her.’”
She was also offered postnatal and prenatal closure of the opening of her spine, the latter being far riskier and only offered at a select few hospitals.
They also only had less than six weeks to arrange it before Michelle would be too far along with the pregnancy to qualify.
After refusing to lose their daughter, Lacey’s parents opted for a risky three-and-a-half hour surgery to fix the hole in her spine while she was still in the womb.
“It sounded completely insane and unfathomable for our financial circumstances and obligations at home," said Michelle. I thought it was crazy.”
The mum-of-one said: “The rest of the pregnancy was riddled with fear and uncertainty. It was beyond difficult to just enjoy being pregnant.
“However, from the copious amount of research we did, we knew that the foetal surgery would be her greatest chance at walking one day and her only chance of reversing her Arnold Chiari II malformation.”
She underwent the foetal surgery on April 27, 2020 at St. Louis Children’s Hospital, Missouri, with more than 35 medical professionals in the operating room.
She said: “It was quite literally the single most horrifying experience of my life.
“It was my first time in the hospital and my first surgery. Knowing my unborn baby was having surgery with me made it utterly terrifying.”
The procedure was three-and-a-half hours long and both Lacey, who weighed 1.8 pounds that day, and Michelle had their own team of doctors looking after them.
They made a ten-inch-long incision across her abdomen, and despite having to spend five days in recovery and waiting a week before she could walk, the procedure was deemed a success.
To ensure Lacey’s safety, Michelle had strict orders of bed rest for the next three months until she was due to give birth.
She said: “I stressed counting baby movements and strictly monitored my aches and pains.
“We got a calendar and counted down each day.”
She was given a Caesarean section on July 20, 2020 at 12:42pm, Lacey was born weighing 6lbs 9oz, and was immediately taken to the NICU.
Special education teacher Michelle said: “The first time I saw her was on a screen in the delivery room while they were giving her oxygen and getting her breathing started.
“I saw that something was seriously wrong with her legs. Her knees were hyperextended to where her feet were up by her face.
“She was stiffened in a fixed position from her positioning in the womb.
“I was so sad for her and afraid.”
Lacey started to move her ankles and big toe early on, but it took her a long time to be able to feed on her own, meaning she stayed in the NICU for 18 days.
She was monitored three times a week for the first three months, but now at 19 months she is speaking at the level of a three-year-old and is learning to walk.
Lacey is partially paralysed from the waist down and this means she still needs help with going to the toilet.
However the tot learned to sit, roll and pull herself along the ground ahead of schedule, and loves nothing more than climbing on things and cuddling her mum and dad.
Michelle said: “Prior to birth, we were told she would have a ‘poor quality of life’.
“The doctor said there was a good chance she would never be able to eat, breathe, talk, stand or walk.
“She does more than that doctor ever imagined. She is pulling to stand, and supported standing on her own now.
“She can climb up onto the couch and go to town on her rocking horse.
“The little things that others might somewhat take for granted are the things that dreams are made of for us - that is one of the many blessings that come with SB life. Life with a disabled person is a life worth living.”
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