A baby girl born with a rare condition has defied odds by living beyond her second birthday.
Charlotte Patt has Shprintzen-Goldberg syndrome, a genetic condition that left her with a deformed body and head.
According to one organization, only 50 people worldwide have ever been reported as having the condition.
Her mother, Tammy, has three other children, and said Charlotte has been a ‘warrior’ and had a ‘miracle’ life so far, even though Mrs. Patt was unsure whether she would survive and doctors almost gave up on her.
“It was overpowering to know that our child had such a rare disorder,” said Wisconsin. “It was also a very hard thing to navigate because so much was happening to our baby all at once.”
Mrs. Patt and Dustin, her husband, were told their child would be deformed after doctors spotted some issues during her pregnancy. However, nobody could determine what was wrong with her, so they didn’t know until their baby was born.
Charlotte was born ‘very floppy’ and didn’t cry. She needed life support and resuscitation within four hours. She was unable to breathe on her own so she had a tracheotomy, an operation to create a windpipe.
Since she was born, Charlotte has had ten operations to deal with the effects of her condition. Doctors almost gave up on her when she was younger.
“Doctors still did not know how to manage the severity of Charlotte’s care and we found many doctors who were not willing to work with us and be “Team Charlotte”,” Mrs. Patt expressed.
“I honestly thought and was led to believe that Charlotte would not live long, but I’ve since seen her progress and pushed to get her the treatment she needs.
“You never expect to become a special needs parent. There was a lot of grief after Charlotte was born.
“We were so incredible happy that she was alive, but it hurt to know that she would face challenges her entire life, that we did not have what we knew as normal with her to any degree.”
Shprintzen-Goldberg syndrome affects the connective tissues in the body. It can leave babies with narrow, long or misshapen heads and far-apart eyes, according to an American research organization The Marfan Foundation.
Children with the condition may also have brain abnormalities, weak heart, weak muscles, and mild intellect disability.
“We had to learn ways to explain Charlotte’s differences to our littles,’ Mrs Patt said.
“It was a very hard balancing act of being there for Charlotte and also being there for Novella and Wyatt. As they have grown, and Charlotte has gone through several surgeries we try our best to explain things to them.
“They understand that they need to treat Charlotte differently than other babies her age, for example, they can’t hold her the same, they need to be gentle and that their sister’s facial expressions let them know how she is feeling.
“They understand that their sister was born this way and needs help from the doctors. You can tell it affects them at times and they get sad or upset.
“The one thing that melts my heart is that they see Charlotte as beautiful and see past her physical features.”
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