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JACKSONVILLE, Fla. -- Holding a picture of their only daughter, Damien and Youmone Berrien, vividly remember their daughter's short life. Sanai Joy was born on Valentine's Day last year.

"She came out not breathing, and my husband and I were frantic. We didn't know what was wrong," said Youmone.

While doctors eventually got Sanai to breathe, the news only got worse.

"It wasn't until maybe three weeks later that we found out she had partial trisomy 13Q, which is a debilitating, life shortening chromosome disorder," Youmone said.

It's a rare disorder affecting only about one out every 10,000 babies.

Despite several surgeries Sanai's parents were told she would not survive.

"They told us she was no longer a candidate for the heart surgery because they knew she wouldn't make it through. They told us that day 'you need to go ahead, take family pictures with her, have her christened if you want and just prepare for her to go,'" Youmone said.

The next day the scheduled her baptism, the picture above taken of her in the only dress she ever wore.

"We had a pastor come in to the NICU, family gathered around and family gathered around and that day, I knew she was going and 2:30, I held her for the last time on June 11th," Youmone said.

Just days before turning four months old, Sanai died.

"I asked her favorite nurse, Kim, 'Kim, will you please hold my baby because I can't hold her when she goes.' And when we got there, she was gone," Youmone said.

Berrien said her daughter was born with 12 fingers, an enlarged tongue and several holes in her heart but despite three ultrasounds, she said she was never told anything was wrong.

It wasn't until her most recent pregnancy that she said her new doctor told her those are all markers for the rare chromosomal disorder and should have been detected on an ultrasound.

"Ask questions. How does this look? Educate yourself. Find out all of your options. Find out what kind of doctor this is. What are the doctor's beliefs? Find out all of that information. Become educated and then pray for the best. That's all you can do after that," she said.

Youmone's other three children were all born healthy. First Coast News talked to an OB/GYN who said amniocentesis is the gold standard when it comes to tests that can detect a chromosomal disorder such as Sanai's.

That test is only generally offered to moms over the age of 35 and those considered to have high-risk pregnancies and Berrien did not have one.

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