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Elliot's Story - Donate Life Nebraska

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Elliot's Story

 

Elliot 3

Elliot was diagnosed in utero with a severe congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS). In HLHS, the left side of the heart is
critically underdeveloped which means the left side of the heart can't effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body. Treatment for HLHS involves either a three-step surgical procedure or a heart transplant, we opted for the three-step procedure since Children's Hospital & Medical Center in Omaha was not doing heart transplants at that time.

Elliot endured his 1st open-heart surgery at just five days old and then a second right before his six-month birthday. Elliot recovered well from each surgery but
started to show signs of heart failure just before his first birthday. In July of 2013 he was admitted to Children's and Elliot was started on a new regimen of medicines to try and help his heart function. Elliot's family was introduced to the transplant team because they were told his heart would not be able to
handle the third stage surgery and he would need a transplant, but they were hoping these new medications would prolong his time. The new medication helped for a few months but after showing signs of fatigue and loss of appetite, Elliot was admitted to Children's Hospital on October 10, 2013 and listed for heart transplant shortly thereafter. Children's performed their first heart transplant in the spring of 2013 and Elliot would subsequently be the fourth child to receive a new heart at their facility.Elliot 2

Elliot was placed on the waiting list as a 1A status (the highest priority) since he was on a continuous IV medication to help his heart function while he waited.  Elliot had various bumps in the road as he waited for his new heart. Elliot's appetite continued to decrease and he had to be supported nutritionally on TPN and lipids. Elliot attended physical and occupational therapy to help with development and muscle tone, but he eventually lost the ability to walk with assistance and bear weight on his legs.

Elliot spent Halloween, Thanksgiving, Christmas, and New Year's patiently waiting for his new heart. Elliot was very well known at Children's as his parents would pull him around in his little red wagon throughout the hospital to help pass the time. Elliot's family never left his side as his mother and father took turns staying with him in the hospital and taking care of his big sister, Lily, at home, which was 2 ½ hours from Omaha. Weekends were a special time when Lily would come to visit and the family could be together again.

On January 13, 2014 Rachel, Elliot's mother, noticed his left leg was not moving much and she called for the nurse. Rachel remembers people flooding into Elliot's room and being told "We need to move Elliot to the PICU, we think he has had a stroke." Elliot had an MRI, revealing that he had a stroke, and a neurologist reviewed the findings in order to keep him on the heart transplant list.  Elliot's parents had no idea that transplant team had received two offers for a donor
heart that day but were waiting for the green light from the neurologist.  Elliot was cleared around 8 p.m. that night and within 15 minutes the phone rang-- Elliot had an ideal heart waiting for him. Elliot's parents were cautioned that this may be risky after all that Elliot had endured that day but they knew it was the right decision. "That was one long night," Mark, Elliot's father, recalled as Elliot was prepped for surgery.  Elliot received his new heart that next morning and it started to beat as soon as it was sewn in by the cardiothoracic surgeons. As Elliot's family waited to see him they were sent a picture of his new heart via Echo and
Rachel remembers remarking "It looks so big," comparing it to Elliot's native underdeveloped heart.

Elliot recovered quickly and was dismissed from Children's three weeks after transplant. Elliot and his family were required to stay in Omaha at Children's Rainbow House until he had his one-month heart cath/biopsy to check for rejection. Elliot's test showed zero signs of rejection. He was headed home just 30 days after transplant, healthy and happy on Valentine's Day. Last August, Elliot celebrated his 2nd birthday and has subsequently graduated from physical and occupational therapy enabling him to walk on his own!

The word "Hero" can be defined as a person who is endowed with great courage and strength, a person noted for feats of courage or nobility of purpose. All though Elliot and his family have endured many hard times and sacrifices through the last two years, they feel blessed with love and believe Elliot will live on to do great things! The gift Elliot has received through his donor has given the Sazama family a new sense of hope.

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