Olivia's Story - Trisomy 18 Awareness Day - Nemours Blog


Olivia’s Story – Trisomy 18 Awareness Day

Brooke Renton’s life changed substantially when her daughter, Olivia, was born in March 2021, both in the physical sense (the family permanently relocated from Tallahassee to an Orlando suburb to be closer to Nemours Children’s Hospital, Florida) and in the emotional sense when she knew she would do anything for her sweet baby girl.  

Born with a rare chromosomal condition called Trisomy 18 at a hospital in Tallahassee, Olivia had to be on a ventilator for the first 11 days of her life. The day before she was supposed to go home, doctors had to perform lifesaving CPR and place Olivia back on a ventilator. Olivia’s heart was “pouring blood into her lungs” due to a hole in her heart known as a ventricular septal defect. NICU doctors in Tallahassee told the family that Olivia would need a specialized center that performed advanced pediatric heart surgery to correct the issue.

Due to the complexity of her Trisomy 18, not every center that performs pediatric heart surgery was an option. Refusing to give up hope, Brooke found Nemours Children’s Hospital, Florida, and Olivia was transferred. Once settled into the Cardiac Center at Nemours Children’s Hospital, Florida, Brooke and her husband were told doctors would do everything they could to improve Olivia’s quality of life.

Dr. Peter Wearden initially performed a palliative heart surgery to allow Olivia to become stronger for a more definitive operation. Afterwards, Olivia was able to come off the ventilator and be discharged to home.

Olivia returned for her definitive operation, ventricular septal defect closure, at 8 months of age. She successfully recovered from the second operation and was discharged to home with her family. Olivia is now doing “amazing,” according to Brooke, and she turns 2 March 17, one day before Trisomy 18 (Edward’s Syndrome) Awareness Day. Trisomy 18 impacts 1 in 5,000 pregnancies each year in the U.S. “She is sitting up and rolling over and doing that many people thought she may never do,” said Brooke, whose family is “forever grateful to the cardiac floor,” and all the doctors and nurses at Nemours. “We just love the doctors at Nemours,” said Brooke. “They’ve given us more time with Olivia.” 

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