A baby born with spina bifida, who underwent spinal surgery in the womb, defied everything and is now learning to walk.
Lacey Grace Bauer’s parents, Michelle and Michael Bauer, were forced to terminate her pregnancy when they learned of her diagnosis after a 20-week scan.
But they ignored the advice, and the girl is already defying her prognosis at just 19 months old – even learning to operate a tiny wheelchair.
Michelle, 37, from West Lafayette, Indiana, said: “We met with the doctor immediately after the scan and heard the words ‘neural tube defect’, ‘lemon head’ and ‘spina bifida’ to describe our daughter for the first time. time.
Lacey Grace Bauer of West Lafayette, Indiana was born with spina bifida. Despite the fact that the doctors told her parents that she would not be able to walk, the baby learned to use her legs. In the photo, the first test of the walking simulator
Lacey started wiggling her ankles and big toe early, but it took her a long time to feed herself, meaning she remained in the intensive care unit for 18 days.
Lacey’s parents were devastated to discover their baby had spina bifida and a neural tube defect on her 20-week ultrasound scan.
“We were completely confused. The tears didn’t stop flowing for a couple of days.”
After two years of trying to start a family, Michelle found out she was pregnant with Lacey on December 5, 2019, shortly before she left for a birthday party.
“I took a test to see if I could drink a few cocktails at a party,” she said.
“Michael hugged me and turned me around. We were thrilled!”
Michelle had a C-section on July 20, 2020 at 12:42 pm. Lacey was born weighing 6 pounds 9 ounces and was immediately taken to the intensive care unit.
Lacey is partially paralyzed from the waist down, which means she still needs help to go to the bathroom.
But almost four months later, at a 20-week ultrasound, the happy couple received devastating news.
Papa Michael, 42, said: “They noticed that Lacey had a lemon-shaped head, meaning that her spinal injury was stretching her brainstem and making her head irregular.”
There was also a large bubble on part of her spine.
The spinal canal of a child with spina bifida does not close completely during development, leaving the spinal cord open from early in pregnancy.
The baby learned to sit, roll and crawl on the ground ahead of time, and more than anything in the world loves to climb things and cuddle with his parents.
Lacey started wiggling her ankles and big toe early, but it took her a long time to feed herself, meaning she remained in the intensive care unit for 18 days.
This leads to changes in the brain, as well as severe injuries associated with nerve damage in the lower half of the body.
Michelle said: “We just found out that we are having a baby girl the day before. We wanted a girl. We went from the highest of the highs to the lowest of the lows in less than 24 hours.
“It was a complete and utter nightmare, but we still had hope.
“We were hoping it was a less severe form of the disease until more tests were done.”
The couple had just found out they were having a girl when a fetal doctor informed them that Lacey’s spina bifida was severe.
They were referred to a fetal doctor who told them that their daughter had a neural tube defect and a lemon-shaped head, indicating that 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’s not an option, I already love her.”
She was also offered postpartum and prenatal closure of the spinal foramen, the latter being much more risky and only offered at a select few hospitals.
Michelle found it difficult to enjoy Lacey’s pregnancy because thoughts of the future left her “riddled with dread”.
Lacey was seen three times a week for the first three months, but now, at 19 months old, she speaks like a three-year-old and is learning to move around in a custom-made wheelchair.
They also had less than six weeks to organize it before Michelle was too far along with her pregnancy to qualify.
Refusing to lose their daughter, Lacey’s parents opted for a risky three-and-a-half-hour operation to fix a hole in her spine while she was still in the womb.
“It sounded completely crazy and incomprehensible to our financial circumstances and obligations at home,” Michelle said. “I thought it was crazy.”
The mother of one said: “The rest of the pregnancy was riddled with fear and uncertainty. It was very difficult to just enjoy the pregnancy.
“However, from the large amount of research we did, we knew that fetal surgery would be her biggest chance of ever walking and her only chance to cure the Arnold Chiari II malformation.”
On April 27, 2020, she underwent fetal surgery at St. Louis Children’s Hospital, Missouri, with more than 35 healthcare professionals in the operating room.
She said: “It was literally the most terrifying experience of my life.
Although advised by Lacey’s parents to terminate the pregnancy, they opted for a risky three-and-a-half-hour operation to fix a hole in her spine while she was still in the womb. Pictured after her birth
“This was my first visit to the hospital and the first operation. Knowing that my unborn child was going to have surgery on me terrified me.”
The procedure lasted three and a half hours, and both Lacey, who weighed 1.8 pounds that day, and Michelle had their own team of doctors.
They made a ten-inch incision in her abdomen, and despite having to recuperate for five days and wait a week before she could walk, the procedure was deemed a success.
To ensure Lacey’s safety, Michelle was placed on strict bed rest for the next three months until she was due to give birth.
Lacey’s scar from fetal surgery where doctors made a ten-inch incision in her abdomen.
She said: “I counted the movements of the child and strictly watched my pains.
“We have a calendar and we’re counting down every day.”
She had a C-section on July 20, 2020 at 12:42 pm. Lacey was born weighing 6 pounds 9 ounces and was immediately taken to the intensive care unit.
Special education teacher Michelle said: “The first time I saw her was on screen in the delivery room while she was being given oxygen and breathing.
When she was born, Lacey’s legs were very elongated and stuck up towards her face.
“I saw that something was seriously wrong with her legs. Her knees were extended so that her feet were in front of her face.
“She was frozen in a fixed position due to her position in the womb.
“I was so sad for her and scared.”
Lacey started moving her ankles and big toe early, but it took her a long time to feed herself, meaning she remained in the intensive care unit for 18 days.
She was seen three times a week for the first three months, but now, at 19 months, she speaks at the level of a three-year-old and is learning to walk.
Michelle was told that her daughter would never have a normal life, but was told that she had done more than all the doctors could have imagined.
Lacey is partially paralyzed from the waist down, which means she still needs help to go to the bathroom.
However, the baby learned to sit, roll and crawl on the ground ahead of time, and more than anything in the world she loves to climb things and cuddle with her parents.
Michelle said: “Before giving birth, we were told that she would have a ‘poor quality of life’.
“The doctor said there was a good chance she would never be able to eat, breathe unaided, talk, stand or walk.
“She does more than this doctor could ever imagine.
“She is pulling to stand up and now maintains independent standing.
“She can climb on the couch and go to town on her rocking horse.
“The little things that others may take for granted are the things that dreams are made of for us—it’s one of the many blessings that come with SB life.
“Life with a disability is a life worth living.”
What is spina bifida?
Spina bifida is a defect in the development of the spine and spinal cord that leaves a gap in the spine.
About 1,500 children are born with spina bifida each year in the United States, according to the CDC. In the UK, about 1 in 1,000 babies is born with the condition.
Most cases are detected before birth, at a 20-week scan.
The most serious form of the disease is called myelomeningocele. In myelomeningocele, the spinal column remains open along the bones that make up the spine.
The membranes and spinal cord are pushed out, forming a sac in the baby’s back.
This sometimes leaves the nervous system vulnerable to infections that can be fatal.
In most cases, surgery is performed to close a gap in the spine after birth.
But damage to the nervous system has usually already happened, leading to:
- partial or complete paralysis of the lower extremities
- bowel and urinary incontinence
- loss of skin sensation
Most children with myelomeningocele also develop hydrocephalus, with excess cerebrospinal fluid (CSF) accumulating inside the brain.
This is caused by a malformation of the base of the skull, in which the lower parts of the brain are shifted down towards the spinal cord.
Infants with hydrocephalus have a shunt placed after birth to drain fluid from the brain, which reduces the risk of increased intracranial pressure in the abdomen.