Samaya the TOF Fighter

“Turn the car around! Turn it around!” she shouted. They had just made it past Lindon, UT. All Natalie wanted to do for Mother’s Day is go home to see her other kids. She missed them so much. Spending day in and day out at Primary Children’s Hospital with Samaya, was all her life had become. Her husband, Sam, looked at her with fear.

“What’s wrong?” he said.

“We got the call! Samaya has a heart!” On May 13th, squished in between two of her boys in the back of a tiny car they borrowed from their brother-in-law to conserve on gas for the long commutes, they raced back to the hospital.

Samaya, at almost 11 months old, had the miracle of a heart transplant. This is her story:

Samaya was born to Natalie and Samang (Sam) on June 21, 2017 with Tetralogy of fallot, a heart condition. And 22Q.11 deletion syndrome or aka Digeorge syndrome is what she has. So, she is basically missing part of her twenty second chromosome. They knew right away that she would need to have surgery on her heart, but they needed to wait until she was either ten pounds or four months. For this tiny baby, four months came first. In September of that year she had her first surgery. They couldn’t get her stable enough on her own afterwards, so they needed to put a pacemaker within a week of that surgery. Natalie watched as her poor baby struggled, attracting every virus you could think of, viruses she didn’t even know existed. Finally, October came and they had a pretty good month and they were released to go home. Then in November, she started getting sick again. Now since they live in Fillmore, UT, it is just over a two hour drive, so right after Christmas, when Samaya started getting even worse she was life flighted up to Primary’s. They stayed there with her until January 18, 2018 when they eventually released her once again.

Something in Natalie’s gut told her not to take her home, but pushed it away thinking that she was just being paranoid. (Looking back, she wish she would have listened to it.) When they came home everyone asked how Samaya was doing. Natalie wanted to smile and say, “She’s great!” But knew that it was not true. During the next three days, Samaya was sleeping, a lot. She stopped eating completely. They had to continue to up the levels of her oxygen, and three days later, on January 21st, when Natalie went to change her diaper, she didn’t wake up at all.  

“We don’t have time to call Life Flight. We have to take her NOW!” And that is exactly what they did. At 6:30 PM, they loaded her in the car and drove her up to Primary Children’s and walked straight into the ER. Her oxygen was up to a liter and she was breathing at 90 breaths per minute, babies normally only breathe 30-60 breaths per minute. They went to put her on a CPAP, but the team knew that wouldn’t be enough. Natalie and her husband watched as the team of doctors and nurses started moving faster. They were planning on having them take her back up to the CICU, (Cardiac Intensive Care Unit), but instead they were wheeling her into the surgery room.

“What is happening?” Panic set in as one of the social workers pulled Sam and Natalie aside so the team of doctors and nurses could try and save their baby. At one point a doctor came over to them asking if they knew was was happening.

“No!” They said. The doctor proceeded to tell them that there was no squeeze left in her heart and their baby might flat line…once hearing that news, everything to Natalie was a blur. Everything felt like slow motion. Like a scene from a movie where the character stands still and the world is moving quickly and muffled behind her. Her mind reeling. In February of 2016, (only two years prior,) Natalie was devastated with a miscarriage of her baby boy at 19 weeks and six days. Just shortly after she was given this gift of Samaya. Being pregnant again they took extra precautions and when they did her ultrasound they said that she had a dilated kidney which they warned us it could be a soft hit of Down syndrome. It’s also a condition of Digeorge, but they didn’t actually know anything about that disease at that point, so when they went to a specialist they only focused on her kidneys, or her heart so no one caught it at the time so we didn’t know till she was born .

“Please God, don’t take her, too.” Six horrifying hours later, at 3 AM, The incredible team of doctors kept her from flat-lining and stabilized her enough to move her back up to the CICU. They told them that Samaya needed a Berlin Heart, but there was no machine ready and they needed to get one shipped in from Germany. For four grueling days Natalie sat with her paralyzed baby girl. They had to keep her in that state, because every time she moved she would become unstable again. Finally on January 25th, the machine came in, the surgery was performed and that Berlin Heart started to pump that baby’s heart. That first 30 days were intense, to say the least. She ended up with a bacteria called NEC, (Necrotizing Enterocolitis) giving her major stomach issues along with MRSA, an awful blood infection that was contracted in her PICC line. Eventually, she was able to fight those off and in March, she was the second girl that ever was moved up to the 3rd floor, the Heart Unit, with a Berlin Heart. That was where they would wait for her heart transplant. They did a newsclip on her and everything!

During her stay there, she started getting stronger and healthier. It was as if her baby girl was coming back to life. You would never know she was hooked up to a machine. They used to joke, “There is only one little thing holding us back- Little Berlin!”

There were so many mixed emotions happening at this time. She new she couldn’t leave her baby, but she missed the other four children and husband. That brings us to the opening of our story, May 13, 2018, where Natalie, two of her small boys, and Sam rushed back up to the hospital and eagerly awaited while Samaya received her new heart. She was sent home not long after that. They continue to have multiple doctors appointments and check ups. Samaya has still battled viruses and infections. Even got MRSA, again, this time in her left ear. She will be needing glasses and will be getting these soon. But when but when I asked Natalie how Samaya was recovering she said, “She is doing fantastic now her heart looks great! She no longer has a feeding tube! She is still behind on her milestones but she improves every day!”

A picture speaks a thousand words…this doctor saved her life multiple times, and there was no doubt that she knew it.

Natalie and her family continues to have faith. Their journey is not over, but this battle has been won!

Follow the rest of her story on Facebook:

Samaya The TOFfighter


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