Samara “Sami” Marie Valencia Giobbie was born July 22nd 2018 to her parents Russell Giobbie and Krissia Valencia.
During pregnancy it was discovered that Samara would be born with multiple congenital heart defects including hypoplastic right heart syndrome, tricuspid artesia, transposition of the great arteries and heterotaxy. These defects would require Sami to have multiple open heart surgeries and even a possible heart transplant throughout her lifetime, the first of which being just 4 days after she was born.
Sami had her first procedure, a Modified Norwood procedure, on July 26th 2018 and required weeks of hospitalization before she was able to be discharged from the hospital. Her second open heart surgery, a Bi-directional Glenn Procedure, was preformed on January 15th 2019.
Sami got through the procedure with flying colors. A few days after being discharged Sami suffered a post-op surgical infection of her surgical incision and needed an unexpected hospital admission and follow up surgery to clean out the infection. After further testing it was discovered that the infection was MRSA, an antibiotic resistant super infection that required Sami to stay in the hospital longer then anticipated to be treated. Super Sami was finally discharged home and the plan was to allow her to grow and live as normal a life as possible and barring any complications and have her next open heart surgery, a Fontan procedure, at around 2 or 3 years old.
Unfortunately that would not be the case. On Tuesday May 21st 2019 Samara was not feeling well and was brought to a local hospital by her parents to be evaluated. During the stay Samara suddenly became unresponsive and needed CPR in order to keep her heart pumping blood to her body. The CPR successfully restarted Samis heart. She was placed on a ventilator and transferred emergently back to Columbia Presbyterian hospital in NYC. Upon arrival to Columbia it was discovered that at just 10 months old Samara suffered a heart attack which is what put her into cardiac arrest.
Three days later on Friday May 24th 2019 Samaras parents noticed her face was twitching and her eyes were suddenly fixed gazing to the right. It was discovered that in addition to the heart attack Sami was now suffering from seizures and had a stroke on the left side of her brain. Sami was able to be extubated off of the ventilator the following week.
After extubation it was discovered that she was not moving her right arm or right leg as a residual effect of suffering the left sided stroke. Over the hospitalization Sami slowly began regaining use of her right leg but her right arm remains nearly paralyzed. It was also discovered that Samaras epiglottis was no longer functioning during a speech and swallow examination causing anything she eats to go into her lungs instead of her stomach. An NG tube needed to be reinserted into her nose for Sami to eat through for at least the next 2 months. Sami was discharged home on June 5th 2019. Samara is currently attending daily outpatient rehab to help her hopefully regain full use of her right arm, right hand and right leg.
She is also being treated outpatient by speech and swallow specialists with the hopes that her epiglottis will begin functioning on its own again. Until then Sami will be getting her nutrients through the NG tube in her nose. If it does not regain function she might need a feeding tube inserted into her stomach in the next few months. The original plan was to postpone Samaras need for a heart transplant until she was older, possibly in her 20 or 30s. Due to the damage endured from the heart attack it looks like Samara will need to be placed on the heart transplant list much earlier in her life than originally anticipated.
Super Sami has been through more hardship then most people have ever had to face during her short time so far on this earth. Samara remains a smiling, happy baby regardless of everything she has been through and her parents remain by her side every minute of the day.
Despite having medical insurance Samaras medical bills were already high from the scheduled surgeries alone. Now after this recent unexpected hospitalization and outpatient needs her medical bills are pouring in and are at an all time high. Russell and Krissia already have so much on their plates focusing on Samara and her recovery from her latest setback. Worrying about how they are going to pay her medical bills and outpatient care is an additional huge stressor that they do not need at this already difficult time. Super Samis Aunts and Uncles decided to put together a fundraiser in her honor. All proceeds collected from the fundraiser and GoFundMe will be donated to Super Samis parents to help them with her growing medical bills. For more information on the Support Super Sami fundraising event please check out our facebook page, Support Super Sami!