Five-year-old girl born with "mermaid syndrome" has taken her first steps after surgery

2023-04-12 41

A five-year-old girl born with "mermaid syndrome" has taken her first steps after surgery to separate her legs.

Blaire Spivey was born with sirenomelia – a rare congenital foetal anomaly which meant her legs were rotated backwards from the knee and fused at her feet.

Mum, Noelle Spivey, 35, found out Blaire had the condition at her 12-week scan and said she was told it wasn’t a matter of “if” but “when” her unborn baby would die.

She admits she was terrified she'd be "scared" of her own daughter.

Blaire survived birth - and underwent a seven hour operation to separate her legs aged 18 months, amputating her legs at the knee.

"Sassy” Blaire got her first full-length prosthetic legs last summer - and has now taken her first steps.

Noelle, a dental assistant, from Lubbock, Texas, US, said: “I was terrified I would be scared of my baby while I was pregnant.

“But when I saw her little feet and little heart I wasn’t terrified at all.

“I thought – ‘she’s just my baby’.

“She’s perfect.

“I tell her she was born a mermaid.

“And I say to her - 'not everyone is used to cool legs like you'.

“They thought she wouldn’t walk.

“She’s beaten the odds.

“She’s just a normal kid.

“It’s amazing to be her mum.

“She’s doing great.

“She wants to be able to run.

“We try and in still confidence in her.”

Noelle was given the news that Blaire had sirenomelia at her 12-week scan.

She said: “It felt like an eternity while we were in there.

“The doctor came in an essentially said – 'your baby has a fatal condition'.

“I started crying – it had been hard enough to get pregnant.

“They said ‘it’s not a matter of if she’s going to die but a matter of when’.”

Noelle was determined not to give up and was closely monitored throughout the pregnancy.

She said: “Most babies diagnosed with mermaid syndrome as a foetus don’t develop a kidney, intestines or genitals.

“It’s scary.”

Noelle was booked in for a scheduled C-section but at her 37-week scan doctors realised her amniotic fluid levels had dropped she was rushed for an emergency C-section.

Blaire was born at 10.27am on February 7 2018 weighing 4lbs 8oz at Texas Children’s Hospital.

She said: “It was the happiest moment of my life.

“Once they made sure she was OK I got to see her and she was crying.

“I put my hand on her head, she looked at me and stopped crying.

“She was born with lungs, heart, brain – everything was normal.

“But she only had one of her two bones in her lower legs.

“Below her knee it was rotated backwards and everything was fused.

“I had been terrified of the unknown.

“But seeing her in person – I was just calm.”

At one-day-old she had a surgery to place a colostomy bag due to intestinal problems.

Blaire spent a month in hospital before she was able to go home.

At 18-months-old Blaire had an operation to separate her fused legs to give her the opportunity to walk.

Noelle said: “She was amputated at the knee and had stubbies fitted the next spring.

“Last summer she had her first full-length prosthetics made with feet."

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