Heidi’s Journey with Trisomy 18: Defying the Odds

Published on: 03/02/2022

Heidi Hanssen, of Boynton Beach, Florida, has conquered more in her four years of life than many adults.  That’s because she was born with Trisomy 18, a rare genetic condition that causes an array of developmental differences.

Her mother, Jennifer Hanssen, learned early on that Heidi would be born with several complex conditions, including a cleft lip and palate and a hole in her heart known as Ventricular Septal Defect (VSD). They were given a devastating prognosis in that there was a 90 percent chance she would not make it past her first birthday.

But Heidi beat those odds.

After almost a two-month stay in the NICU, Heidi went home with her family. They would make it their life’s mission to get her the best medical care possible.

At seven months, she underwent her first surgery at Nicklaus Children’s, an operation to close the hole in her heart, performed by Dr. Redmond Burke, pediatric cardiovascular surgeon and Director of Cardiovascular Surgery at Nicklaus Children’s. Jennifer says that heart operation made her strong enough to face the next steps in her healthcare journey.

Heidi and her parents standing with Dr. Redmond Burke

This photo was taken before COVID-19

When Heidi was 13 months old, she was diagnosed with a rare form of pediatric liver cancer. After a successful liver resection by Dr. Leopoldo Malvezzi, pediatric surgeon at Nicklaus Children’s, followed by two rounds of chemotherapy under the care of Dr. Guillermo De Angulo, pediatric oncologist at Nicklaus Children’s, she beat cancer. 

When she was three, Heidi underwent surgery to repair a tethered spinal cord with Dr. John Ragheb, pediatric neurosurgeon and Director of Neurosurgery at Nicklaus Children’s. One of the many benefits this surgery afforded her was the ability to bear weight on her legs.

Heidi has also undergone several cleft lip and palate surgeries with Dr. Chad Perlyn, pediatric plastic surgeon at Nicklaus Children’s, to restore her beautiful smile. With each procedure she has faced, Heidi has grown healthier and stronger.  The journey has not been easy, but Heidi’s joy for life keeps her motivated through each difficult step.  

“Heidi is such a strong, happy and playful little girl who is so proud of all she’s learned and accomplished. She actually became a little sad the last couple of times when she had to go home from the hospital, because she was having such a blast there. From watching movies in the comfy bed, to playing with toys thoughtfully provided by the child life specialists, Heidi seems to always find a way to have the best time in the hospital and spread her joy to others,” said Jennifer.

Heidi smiling and holding her mother's hand in hospital bed

“We are so grateful for each and every one of her physicians who were willing to give Heidi every chance possible at a better quality of life. They have provided her the opportunity to live a healthy, vibrant life beyond what we ever could have imagined in the early days of her diagnosis. Nicklaus Children’s has been an answer to many prayers, and we largely have them to thank for the beautiful life Heidi is living today.”

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