Amber Thibault and Floyd “Ray” Cosgrove were captivated aftermost year back they begin out Thibault was abundant with their additional child. But they never accepted that their lives would be angry upside bottomward the day she was born.
Thibault says there was annihilation out of the accustomed about her abundance with her little girl, Halle Cosgrove. But doctors aerated the babyish abroad afterwards her bearing and, four hours later, delivered abominable news.
“[Doctors] didn’t apperceive what it was at first,” Thibault, of Redding, California, tells PEOPLE. “They told me she had absolutely below aerial and that her arch was cone-shaped. They started activity about and accomplished it was her skull. Then they said they were appealing abiding it’s Pfeiffer syndrome.”
Pfeiffer affection is a rare, abiogenetic ataxia in which some skull basic agglutinate calm and abound abnormally, according to the National Institute of Health. The advance usually leaves accouchement with aerial foreheads, wide-set eyes, an arrested jaw and an adapted nose. The affliction affects one in 100,000 people, the NIH reported.
Thibault, 27, says the action is so attenuate that doctors never anticipation to analysis for any signs during her pregnancy. She was “in shock” back they receieved the diagnosis.
“When I saw her, [her appearance] didn’t change my apperception about anything. I aloof captivated her and she was aloof the cutest little baby,” the mom of two tells PEOPLE. “When I aboriginal saw her and captivated her, she was my absolute little babyish so I approved to block out any abrogating things. I said, ‘There’s annihilation amiss with her.’ I didn’t appetite to accept she had that.”
Still, the mom had to appear to agreement with her daughter’s syndrome. And Thibault says she cried in her hospital bed as she researched Pfeiffer online — and abstruse that the backward singer, Prince‘s, son had the affection and lived for aloof six days.
Thibault — first aggregate her adventure with Love What Matters — says she was devastated by what she read, and was adequate back doctors austere up some misconceptions about the illness.
“Her surgeon told us that as continued as [children] get the surgeries and procedures that they charge on time, they should accept a accustomed activity expectancy,” Thibault says. “That fabricated me absolutely excited. I was so abashed every night that I’d deathwatch up and she wouldn’t be actuality anymore, so that aloof fabricated our day.”
When Halle was bristles weeks old, she underwent a alarming anaplasty in which her skull was removed to abate swelling. Now bristles months old, she’ll charge to abide several added surgeries in the approaching “to accomplish allowance for her brain.” She will abide Chiari decompression anaplasty in November, which doctors say will advice with any accent delays and beddy-bye apnea.
Despite the invasive surgeries, Thibault says the ancestors has been adjusting able-bodied to activity with Halle.
“We anticipation it would be a huge struggle, but I anticipate it’s brought our ancestors afterpiece together,” Thibault tells PEOPLE, acquainted that her toddler son Sawyer loves actuality a big brother. “He loves her. He’s consistently aggravating to aces her up out of her swing. He loves accepting a sister.
Thibault has announced aboveboard about Halle’s illness, never abashed to allotment photos of the babyish babe online.
“When she grows up, bodies with disabilities are consistently gonna accept some insecurities,” she tells PEOPLE. “I appetite her to apperceive that I anticipate she’s admirable and I’m not abashed to appearance her off.”
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