My granddaughter, Samara Marie Valencia Giobbie was born July 22nd, 2018, to her parents Russell Giobbie and Krissia Valencia. During her pregnancy it was discovered that Samara would be born with multiple congenital heart defects including Hypoplastic Right Heart Syndrome, tricuspid atresia, transposition of the great arteries and heterotaxia. These defects would require Samara to have multiple surgeries and even a heart transplant throughout her lifetime, the first of which being just 4 days after she was born. Samara 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 performed on January 15th, 2019. Samara went through the procedures with excellence. A few days after being discharged she 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 than anticipated to be treated. Samara 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 3 or 4 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 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 stopping her heart. As a result, Samara suffered an ischemic stroke causing permanent brain damage. She lost the use of her right arm and hand. It was also discovered that Samara's epiglottis was no longer functioning during a speech and swallow examination causing anything she eats or drinks to go into her lungs instead of her stomach. Samara needed another surgery to insert a G-tube so she could eat and drink. To this day Samara still requires Occupational, Physical and Speech and Swallow therapy. Her ability to move her right arm and swallow has returned thanks to years of therapy. Her G-tube was removed last year, and she can eat and drink normally again. Unfortunately, her right hand never recovered. She will never regain use of her right hand due to the brain damage suffered from the stroke. Samara has been through more hardship than most people have ever had to face their entire lives. Samara remains a smiling, happy little girl regardless of everything she has been through, and her parents remain by her side with support and incredible love. Before Samara was due to have her Fontan Procedure her parents found out there is an alternative surgery called the Complex Biventricular Repair. This is a better surgery that would repair Samara's heart extending her life and not requiring a heart transplant down the road. The Fontan is only a band aid and will fail as she gets older requiring a heart transplant. After much research and speaking to multiple surgeons, Russell and Krissia decided to take Samara to Houston Texas to get the procedure. On September 27, 2024, Samara was in surgery for over 12 hours. Unfortunately, due to her complicated heart anatomy the surgeon was not able to perform the Biventricular Repair. The only option for Samara was the Fontan procedure. There were complications after the surgery requiring Sami to have another exploratory surgery to locate the problem. Samara oxygen stats were not returning to normal, and she was required to remain on oxygen long after she was supposed to be. They discovered that she had collateral vessels in her heart and lungs causing her oxygen stats to be dangerously low. That combined with the fenestration placed in her heart during the Fontan was causing her problems. The doctors in Houston informed them that she will need to be on oxygen after they take her home. They said this is common in kids with Hypoplastic Right Heart Syndrome. The doctors were expecting the Fontan surgery to slowly adapt and repair this condition over the course of three to six months. Unfortunately, this was not the case. Samara is still on oxygen today and although her condition has improved slightly, she should be off the oxygen by now. After speaking with the doctors in Houston it has been decided that Samara must undergo another surgery to return her oxygen stats to normal. Although Samara is covered by Russell's health insurance, the hospital in Houston is out of network. They were only supposed to be in Texas for 3 weeks for the initial surgery. They were there for over 7 weeks (about 1 and a half months). This combined with the extensive medical bills has caused their family financial heartache. Samara needs to go back to Hoston for this upcoming surgery. Unfortunately, they do not have the money to be able to afford the expensive trip, past and future medical bills. I am asking for your sympathy and kindness in helping my granddaughter and her parents pay for her trip and medical bills. It has been a long and hard road for this family. Samara just turned 5 and already has undergone 9 surgeries. She has amazing parents that will do anything for their daughter. Samara is a kind and sweet little girl who deserves the world. I love her with all my heart and pray for her every day. Please help her and her family. Thank You and Bless You All. Maria Gongora
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