Olivia Estrella

KK Name: Olivia Estrella

Born: October 20, 2016 - Passed: August 3, 2018

Cognitive Age: 9-12 months at date of death

Therapies: Occupational, Physical, Speech therapies

Schooling: N/A

Siblings: None

Parents: Eli and Emily Estrella

Kabuki Symptoms: Hypoplastic Left Heart Syndrome, scoliosis, right rena genesis, left kidney dysplasia and atrophy (resulting in end stage renal disease), mixed sleep apnea, submucosal cleft palate, hypotonia, chronic lung disease (result of 3 months straight of intubation), failure to thrive, astigmatism, gtube dependent, intestinal malrotation, right vocal cord paresis, global developmental delay

Olivia's Story: Olivia was the first child for Eli and Emily, and they were ecstatic when they discovered they were going to be parents for the first time. Emily did not have any major complications during her pregnancy, other than exposure to the Zika virus. They also learned while Emily was pregnant that Olivia would have some cardiac defects and that she was missing a kidney. They were prepared for her to go straight to the NICU, but knowing that's happening and going through it are two different things. On top of her known congenital defects, Olivia suffered from meconium aspiration, and Emily suffered some of her own complications and was unable to even see her daughter for 48 hours.

Olivia was taken straight to the NICU to be put on medication for her heart. Emily couldn't hold her for 48 hours, but she remembers that first cry and it was music. At just 5 days old, Olivia had her first open heart surgery, the first in a standard set of 3 procedures needed to repair hypoplastic left heart syndrome. One day before the surgery, the Estrella's would learn that the one kidney Olivia had wasn't working properly. They were devastated. Olivia would spend 83 days in the NICU to start her life, and while she would return home, it wouldn't be for long. Due to her kidney failure, Olivia would have an inpatient stay at least once a month for the duration of her life due to metabolic problems.

Around 4 months of age, Olivia had her second open heart surgery and would be confined to the PICU for 5 long months. Each time she had a procedure, the Estrella's were faced with the possibility that Olivia wouldn't make it. But each time, she did. She fought long and hard for her life, and while she persevered, it took a toll on everyone.

When she wasn't in the hospital, Emily and Eli did everything in their power to give Olivia a "normal" life. They took her to parks, went on walks around the city and visited family and friends. They took her to therapies and countless appointments. They gave her toys and worked on her development, they gave her love and showed her how parents were supposed to treat their children. They did everything in their power to create a safe, loving and nurturing environment for their special girl. They did everything parents are supposed to do for their children, and they did it with the love and support of their family and friends, both local and distant.

In July of 2018, Olivia went to the hospital for the placement of a peritoneal dialysis catheter. It was a step in starting dialysis until she was strong enough and big enough for a kidney transplant. Unfortunately, things did not go as planned. The doctors discovered she had an intestinal malrotation and ended up needing emergency surgery due to an obstruction. Complications from this procedure caused Olivia to become septic, and on August 1, 2018, she lost her battle. She fought long. She fought hard. She fought with everything she had. And that is how we remember Olivia. 

Olivia’s Favorites: "Olivia loved playing with paper or anything crinkly, going outside, riding in her stroller. She loved sitting in the bath tub with warm water. She loved swings, LOVED watching "Familia Telerin" and "Veggie Tales." She also loved her tag doll. She hated IV’s, diaper changes, and blood draws!!"

 

How Olivia has impacted the family: "Kabuki syndrome has changed us in that we are more compassionate and sensitive to the medical/special needs community. Fierce advocates, even if that means having to stand up to people who are against us."

Olivia was a light in this world where darkness seems to run rampant. Despite all she endured, all she overcame, she always had that Kabuki smile on her face. She warmed the hearts of everyone she met, and many people whom she never got the chance to meet. She was taken from her parents, and from this world, far too soon. But she left her mark by showing the world what defying the odds truly means. She was given a 50% chance to survive her first open heart surgery because of her kidney issues, and she did that with flying colors. She surpassed all doctors expectations for her life, and while she eventually succumbed to an infection, she fought valiantly to the end. If you'd like to have a permanent reminder of Olivia and also help the Estrella family, please check out the vinyl remembrance wings available in the ATK Shop.

Olivia will never be forgotten. Fly high, sweet angel.

MAKE A TAX DEDUCTIBLE DONATION TODAY!
All Things Kabuki (ATK) is a registered 501(c)3 non-profit corporation based out of Wasilla, Alaska. We are the only U.S. patient advocacy group supporting the Kabuki community globally. Our mission is to raise awareness, incite research, and support individuals and families affected by Kabuki Syndrome. 

© 2017-2019 ALL THINGS KABUKI

  • Twitter - White Circle
  • Facebook - White Circle
  • White Instagram Icon
  • YouTube - White Circle