Annadale toddler born with rare condition is fighting for her life – SILive.com

STATEN ISLAND, N.Y. -- When Annadale resident Krissia Valencia and her husband, Russ Giobbie, went for the 20-week sonogram of their unborn baby girl, they were shocked to hear the doctors devastating news: Their baby suffered from a condition known as hypoplastic right heart syndrome with tricuspid atresia.

She is now 14 months old and fighting for her life.

Basically, she has half a heart because the tricuspid valve between the right upper and lower chamber never formed, said Giobbie. The right side of her heart, which is responsible for sending blood to the lungs, is useless.

The couple was referred to a cardiologist, who confirmed the diagnosis, after which the parents were assigned a medical team at New York-Presbyterian/Columbia University Childrens Hospital in Manhattan, where beautiful Samara Valencia-Giobbie, affectionately known as Sami, was born on July 22, 2018.

Four days later, she had her first open heart surgery after a grueling battery of tests. That initial eight-hour surgery was successful, but the fight is far from over.

Baby Sami Giobbie is now 14 months old, but had open heart surgey at 4 days old to correct a heart defect. (Courtesy of the Valencia-Giobbie family)

Unfortunately, this is just a Band-Aid, said Giobbie. When Samara gets older, she will most likely require a heart transplant, depending on how long her heart lasts. The doctors predict anywhere between high school up until her 30s.

Giobbie explained that multiple open-heart surgeries will re-route the arteries and veins that go into the right side of the heart and move them in order to bypass the right side of the heart and go directly into the pulmonary artery.

This means that the left side of her heart will be doing all the work and pumping for both sides. Unfortunately, this means her heart will wear out when she gets older, requiring a heart transplant.

Baby Samara Valencia-Giobbie suffered a heart attack after her open-heart surgery. (Courtesy of the Valencia-Giobbie family)

In January 2019, Sami had her second open heart surgery, the Glenn procedure. Unfortunately, it did not go well, and Sami suffered post-op complications. But she was a fighter and was discharged after a three-week stay in the hospital.

Two days later, she spiked a 103.5 fever and was rushed back to the hospital. She had contracted MRSA and was septic. The infection was in her bones, and caused her rib cage to separate.

They had to do another surgery to go in and clean up the infection and reattach her rib cage. It was horrible, said Giobbie. After being there for three more weeks on very strong I.V. antibiotics, we finally went home.

Valencia and Giobbie thought they could take a breather since the next surgery was planned after her second birthday, in summer 2020. Unfortunately, life had other plans. In May, Sami spiked another 103 fever. We took her to a local hospital, but after six hours, Sami suffered a heart attack and died in my wifes arms, recalled Giobbie.

The doctors were able to revive her, but not before she suffered an ischemic stroke during her cardiac arrest. After five hours, Sami was stabilized and transported back to New York-Presbyterian/Columbia University Childrens Hospital.

Baby Sami Giobbie is now 14 months old, and fighting for her life, following open heart surgery, a heart attack, and a stroke. (Courtesy of the Valencia-Giobbie family)

It was the worst experience of our lives, and I wouldnt wish what we went through on my worst enemy, recalled Giobbie. They kept her sedated for about a week and ran test after test. When they finally took her off sedation she started having seizures. They did and MRI and an MRA and soon learned she suffered the stroke and has brain damage.

Baby Sami Giobbie is now 14 months old, and fighting for her life, following open heart surgery, a heart attack, and a stroke. (Courtesy of the Valencia-Giobbie family)

Sami has lost the ability to use her right arm and hand, and to swallow food and water. She was given back a feeding tube so she could eat and drink. The bright side is that the doctors predict that because she is so young, she will regain the use of her arm with intense therapy and learn to swallow again.

Baby Sami is now home and receiving occupational therapy, physical therapy, and speech/swallow therapy three times per week.

Thank God it has been helping, said Giobbie. She is far from 100 percent, but she has regained some use of her arm. Her fine motor skills still arent great, but she can crawl and get around a bit.

Although still on the feeding tube, Sami is now able to eat small amounts of food by mouth. It has been a very long and difficult road for my wife and me, said Giobbie. I cant even begin to express the stress and worry that we have been through.

After Sami was born, my wife stopped working to stay home with Sami full-time. We are happy she is still with us and love her more than anything in this world. My family and close friends have been very helpful and supportive with the hardships that we have gone through.

If youd like to help Sami, please visit her GoFundMe page and consider making a donation: https://www.gofundme.com/f/ride-for-sami to help with her medical expenses that are not covered by the familys health insurance.

Baby Sami Giobbie is now 14 months old, and fighting for her life, following open heart surgery, a heart attack, and a stroke. (Courtesy of the Valencia-Giobbie family)

Also, this Sunday, Oct. 6, there will be a fundraiser for Sami, organized by Giobbies friends -- his co-workers at the Department of Sanitation, Michael Cancelleri and John Newell. The event starts at 9 a.m. at Harley Davidson on Forest Avenue, and is open to both motorcycle riders and non-riders. For those who ride, the event ends at the Waterside Cafe on Ellis Street, where non-riders can meet the riders for the after-party.

The donation is $20 to participate in the ride, and $40 for the ride and after-party at the Waterside Cafe.

There will be a 50/50 and raffles donated by the Staten Island Yankees and Ink Stained Tattoo.

All funds raised will go to defray the medical expenses and future treatment of Samara.

There will be a fundraiser on Sunday, October 6, to help defray Sami Giobbie's medical costs.

Michael Cancelleri said he feels compelled to help Giobbie because Samis condition hit close to home. I raised my little brother, who was born with the same thing as Sami, said Cancellier. It was tough and mentally and emotionally draining, going in and out of hospitals. It is hard seeing someone you love more than yourself in such pain and being so helpless.

It changed my life a lot, and seeing Sami go through this brings back those feelings. I feel everything happens for a reason. When I see Sami, I see my brother, and hopefully this fundraiser will help.

Co-organizer Newell said: I hope people will come and join us for this important fundraiser for Sami. I think we can all relate, as parents, aunts, uncles, brothers, sisters, sons and daughters. We all want to help our family out and we all should help Sami out.

Baby Sami Giobbie is now 14 months old, and fighting for her life, following open heart surgery, a heart attack, and a stroke.

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Annadale toddler born with rare condition is fighting for her life - SILive.com