Practically everyone believes that their little boy or girl is the absolute best thing in the world. It could be their ballet recital or the way they defend on the pitch every Saturday, but you can see something unique and special that no one else has. It's true that every single child has their own talents and abilities, and that everyone has something to offer to the world. However, not everyone can actually claim that their child is miraculous in some way. Except for Jett McNamara.
Not only has he astonished top doctors in his home country of Australia, but if they had been right, he might not be the child he is today. He may not even be alive. However many terrible diagnoses this baby had to deal with, he somehow overcame them, hence earning the title "Super baby", and making his parents very proud indeed.
They Were One Big Happy Family When They Got Surprising News
The story begins with the completely normal couple Amy and Leigh McNamara. Residents of Bendigo, a town famous for pottery in Australia, the couple had three children and were living a happy family life. When Amy got pregnant for a fourth time, everyone was overjoyed. The couple was delighted to add another child to their brood and confident that they knew what they were doing.
Alyssa, Sam, and Maddie were healthy children, with nothing more than a bruised knee between them. Amy and Leigh had nothing to make them suspect that this child would be any different. That didn't mean that they'd grown complacent, it simply meant that nothing out of the ordinary had ever happened before.
Could Something Be Amiss?
Amy knew what to do in pregnancy, so she booked all the requisite medical appointments and kept a healthy diet, avoiding everything that pregnant women shouldn't eat. She stayed active and her scans seemed to be proceeding as normal.
However, something showed up that alarmed the doctors considerably, as there seemed to be something wrong with the baby's heart. When they performed a normal scan, everything that had seemed great beforehand was swept aside when they noticed that the little boy's heart rate was slowing inside the womb. They had to do something, very quickly.
Amy Had Never Been In This Situation Before
Having had three bouncing babies prior, Amy hadn't been in this situation before. Of course, she had counted her lucky stars at times, but in reality, she hadn't much time to think about what would happen if any of her children were ill.
There wasn't anything in either of their families to suggest that they had anything to worry about. The first thing the doctors had investigated was why the baby's heart rate had plummeted so low in the womb. They discovered that Jett had three holes in his heart. This was pretty shocking for Leigh and Amy to hear, but there was worse to come.
It Felt Like An Emergency
Although the doctors told Amy to keep calm, obviously she was startled by the turn of events, as any expecting mother would be in her situation. Later, they had a quick meeting to decide what their plan of action would be.
Although it was always preferable to keep the baby in the protection of the womb for as long as possible, this time they thought that they should get the baby boy out as soon as possible. If they wanted to save his life, the doctors would have a much better chance of doing that if they could treat him directly. Amy was advised to get ready for emergency surgery.
Only One Option Available To The Desperate Couple
The doctors had discussed performing a surgery in-utero, but doing so is extremely precise work that demanded a specialist to perform, and not every doctor has experience in it. At that point, even if they were to request a specialist, it may be too late for the little boy.
The doctors realized that they could perform an emergency C-section, and give baby Jett the best possible chance for survival. Amy tried to not to stress and Leigh reassured her. The doctors knew what they were doing and they were confident that they could help Jett once he was born.
Amy Felt Massive Relief But She Wasn't Prepared For What Was To Come
Amy endured the emergency C-section on 2 January 2013 with as much bravery as she could muster. She had to believe that her baby would be ok. When Jett emerged from the womb, he cried out as any newborn would.
Amy breathed a huge sigh of relief. Even though he was five weeks early, her baby was alive, he was strong and sounded healthy since his cries had appeared to be normal. Now, it was up to the doctors. Before they whisked him away, Amy saw a healthy baby boy. Somehow she knew that Jett would be just fine.
And The Bad News Starts Coming
The doctors told Amy that they were taking Jett straight away but that they would return to update her. Leigh and Amy clutched each other's hands and hoped for the best. Amy tried to get some rest as the doctors told her that Jett was in an incubator in the neonatal intensive care unit (NICU). She wanted to be by her little boy, but she knew he was in good hands. Amy wasn't left long waiting though, as the doctors returned quickly baring grave news. They tried to explain to Leigh and Amy what the problem was, but neither of them could fathom it.
The doctors had come to tell Leigh and Amy that Jett had some serious problems that weren't related to him being born prematurely. There wasn't an easy way for them to explain to the parents that this wasn't an easy fix. They advised Leigh and Amy that Jett had abnormal features, but neither parent really understood. When Jett was born, he looked like a perfect little boy. The parents didn't even know where to begin with asking questions.
The Doctors Begin Listing Problems With The Baby
The parents sat stunned as the doctors reeled off the many things that their boy had wrong with him. They couldn't begin to fathom how his life would be. Amy struggled to hold back the tears.
It turned out Jett also had kidney problems. This meant that he would need to have regular dialysis to keep his kidney working and he may need a transplant in the future. It was a lot for any child, let alone a newborn. Then they told his parents that Jett had no calf muscles and his feet were pointing upwards towards his shins.
Jett Was Born With A Rare Disorder
While Amy and Leigh struggled to deal with everything the doctors were telling them, wondering if their little boy could survive, Jett was proving himself quite the little fighter in the NICU. The doctors concluded that he had a particular disease, which is very rare, only affecting around one child in every 25,000.
This was called sacral agenesis. Amy and Leigh had never heard of it, and most of the doctors at the hospital had never even seen a case of it before. The parents wondered what this meant for their son's quality of life.
What They Were Dealing With
One of the ways the doctors had managed to diagnose the disease was when they recognized that Jett was born without a part of his spine, the lower part. It was difficult to break the news to Amy and Leigh that Jett would likely never walk and that his movement would be quite restricted.
It seemed he would have to undergo quite a few operations, but they'd take it one step at a time. Amy broke down when she heard that her son wouldn't ever walk. She realized that this would limit him severely.
A Rapidly Changing Situation
The parents needed to find out whatever they could about the disease and hopefully Jett could have a shot at a decent life. At least he had three loving siblings to go home to. It was a huge shock to the whole family, but they were tight-knit and all agreed to do what was best for Jett.
Amy decided that she would become a full-time parent, this meant that the family would be relying on only one income, but they felt Jett would need the extra care. Then, as they realized how many specialist appointments the little boy would need, they moved their home to Melbourne so it would make things easier.
Weekly Hospital Visits Were Necessary
After they had moved just over 150 km from Bendigo to Melbourne, Jett began weekly hospital visits for the first two years of his life. There were other specialists to see, each for different things - from his spine to his kidneys to his heart. It was expected that Jett would require heart surgery to repair the three holes the doctors had identified on the day he was born. The specialists all wanted to ensure that Jett was strong enough and could handle such a serious operation. However, one day, they spotted something that made the doctors all take a closer look.
The doctors initially couldn't believe their eyes when they had a look at the MRI. It appeared that the holes in Jett's heart had closed up, all by themselves. It was practically unheard of. In fact, Jett's doctors said it was nothing short of a miracle. It would save Jett having to go for a risky operation and it meant that they didn't have to worry as much about his heart anymore. Amy had always called him her "super baby" but now others started using the term too.
Maintaining A Positive Spirit Throughout The Whole Ordeal
Jett was a happy little boy, who never seemed to let anything get to him. He was a ray of sunshine to everyone that met him and he delighted his family every day. However, just because his heart was no longer a problem, he didn't mean that everything else had healed.
Due to his spine and legs, he still had many more hospital appointments to attend and several surgeries ahead of him. They found out that Jett would need a specialized wheelchair, but it cost $6,000 AUD. Finances were already strained for the family of six, surviving on Leigh's income. Of course, they wanted to give Jett everything they could, but they couldn't make money out of thin air.
Having A Positive Attitude And Big Smile Go A Long Way
Jett was well known in his local community. His big beaming smile had won him a lot of fans. Of course, people were aware that he couldn't walk, but they probably didn't know the list of health challenges that he faced daily.
Some people that were very aware of Jett's condition were the team at the local pharmacy. They saw the family regularly, as they popped by to pick up medication for Jett. The staff all decided to pitch in to help the family buy the specialized wheelchair that Jett so desperately needed.
A Port In The Storm, In The Shape Of A Kind Team Of Pharmacists
The McNamara's were overwhelmed with gratitude for the team at the pharmacy. This was a real act of kindness and the single-income family would really have had no way to pay for the chair. Amy says that having Jett has really shown her what good there is in the world.
Jett was delighted with his new chair. The little boy quickly got to grips with it, and it made life easier that he could get around in the chair. However, Jett's mobility was still limited and he would still have to undergo various procedures. For now, they were happy that this seemingly insurmountable financial obstacle had been overcome.
Jett Surprises His Family Again And Again
Jett loved playing outside in the yard with his siblings. Amy knew that the older children would look after him, so she popped inside to do some chores one day. Shortly afterwards, she heard the older children shouting, and her heart leapt into her mouth as she ran to the yard.
She definitely didn't expect the sight that she saw when she got there. Jett had taken a few steps. The other children were jumping around, cheering him on. Somehow, the "Super Baby" who was told he would never walk had defied all the odds and walked. He truly was a miraculous child.
Super Baby Continues to Shock Doctors
No one really knows how Jett could have overcome his spinal injuries so easily. Was it sheer determination? The boy's zest for life? Doctors really didn't have an explanation for it when Amy brought Jett in to see them.
He slowly built up his strength, walking four steps, then eight. Now he can play in the yard with his brother and sisters. When he finds using his feet or legs a challenge, he simply uses his hands. He is smart and takes initiative. Maybe the wheelchair won't be needed forever.
In An Incredible Reversal, Jett's Kidneys Rebounded
Just a short time after Jett had shocked everyone by walking, doctors discovered something else that they could hardly believe. Jett's kidney problems seemed to be completely resolved! When Amy and Leigh were told that he won't need regular dialysis, they practically jumped for joy.
Once again, their bright little boy had proved that he was so far out of the ordinary. It didn't mean that everything was ok. Jett had five operations on his feet and legs, so he does need help from time to time. Whenever he is healing, he smiles up from his wheelchair, never taking a smile off his face. He is overjoyed with his mobility and is very playful with his siblings.
Jett Is Not So Different From The Other Kids
As Jett gets older, he has begun to realize that he's not quite like other children. What he probably doesn't yet know is quite how special he is. His positive attitude combined with his superpowers of getting better so quickly make him one unique little boy.
Amy and Leigh are no longer quite so worried about the future for their little boy. He might have to face a few more health challenges, but who better than their little Super Baby? He's already made miracles happen, which most people never do in their life.
Jett Is Unstoppable
Amy credits Jett's older siblings with his indomitable spirit. She says that he always wants to keep up with them and they encourage him. When he was born, there's no doubt that everyone was a little overwhelmed by Jett's congenital disorder, even the doctors treating him.
However, Jett has continued to surprise everyone and there is a lot of hope for his future. As Amy says, even if biology stops him, Jett will find a way. They all hope that he will live as normal a life as possible.
This Man Lived for 555 Days Without a Heart in His Chest
There are around 4,000 people in the U.S. in need of a heart transplant at any given time. If they spend too much time on the waiting list, their already weak heart can't keep up with the demand, and their other organs start to fail.
And you already know that you need a heart in order to stay alive. So how is it possible to live without a beating heart in your chest? Just imagine the shock on Stan's face when he heard the news.
In 2005, Stan Larkin was just an ordinary boy, living his life to the fullest, playing basketball with his friends. But, one day, as he was shooting some hoops on the court, he suddenly collapsed. He was rushed to the hospital, and doctors ordered a few tests.
After the many examinations that Stan endured, the doctors managed to find out what was wrong with him. However, Stan never knew that this diagnosis would completely turn his life upside down.
The Initial Diagnosis
When Stan collapsed and came into the hospital, it didn't take doctors long to realize what was wrong. When they finished all tests and examinations, they concluded that Stan had familial cardiomyopathy. For those that don't know, familial cardiomyopathy is a genetic disorder that results in inefficient blood flow.
However, if the disease goes untreated for a long time, the heart loses its ability to pump blood through the body. It also loses the ability to maintain a regular heartbeat, which can lead to heart failure or arrhythmias (irregular heartbeats).
Born With Disease
Stan took the news really well. Although he was born with cardiomyopathy, a life-threatening genetic disease that causes the heart muscle to become enlarged, he was told that he could live a normal life with sufficient treatment.
However, he wasn't the only one with this disease. After the doctors diagnosed Stan, they also tested his older brother Dominique. It turned out that his brother also inherited this disease, but fortunately for him, they caught it early on.
Stan Got Worse
Stan was relieved, and he was happy that he could go back to his everyday activities, especially his favorite one – playing basketball. However, this story wouldn't be unbelievable if everything went according to plan. Unfortunately, his condition started to worsen.
The doctors had a relatively simple solution - Stan needed a heart transplant. Stan was relieved because that meant that he would be finally free. No more doctors, no more precautions. With his new heart, he would be able to shoot for the stars.
Because of the high demand (around 4,000 people in the U.S. require a heart transplant at any given time), Stan was placed on the waiting list until a matching heart appeared. However, nobody knew that Stan's health would suddenly become even worse.
He was so close to his new heart, but he needed to stay alive. In order to keep him alive and healthy enough for the surgery, there was a need for a temporary interim solution, and it came in the form of an artificial heart.
Stan needed to stay well and alive so he could receive his new heart, so doctors decided to substitute Stan's declining heart with an artificial one. His brother was also up for the transplant, and he also got an artificial heart.
"Many of these patients have hearts that are so weak, the kidneys, liver, and other critical organs will fail while they are waiting," said Cohn, who was involved in Stan's care. "Many of these patients would die without some form of support," such as an artificial heart.
The Surgery Was a Success
Stan's brother Dominique remained a hospital resident for six weeks with an artificial heart until a suitable human donor was found. However, things were a little different for Stan. He had to wait a little bit longer, or so he thought.
Dr. Jonathan Haft, a surgeon from the University of Michigan who performed operations on both brothers, told CNN that familial cardiomyopathy is "an awful condition to have." Dr. Haft also said that Stan was the ideal candidate to test an artificial heart away from the hospital.
First of the Kind
The name of his artificial heart was SynCardia. It is a unique device used when the patient's heart completely declines and stops functioning normally. With SynCardia, Stan was able to go home and wait until a suitable heart donor was found.
SynCardia is a unique device that doctors use when both of the patient's heart ventricles fail. That means that the heart is no longer able to pump blood. The only downside is that you need to carry it around in a backpack and that you don't have a real one in your chest.
Heart in a Backpack
The concept of not having a real heart surprised Stan, and he said to CNN, "I was shocked when the doctors started telling me that I could live without a heart in my body and that a machine was going to be my heart. Just think about it – a machine."
Stan's temporary heart was connected to another machine via two tubes that emerged below Stan's rib cage – aka the Freedom Driver. The Freedom Driver ensured that the artificial heart had enough power to work, and it also enriched the blood with air, so that blood could easily flow around Stan's body.
It was really a neat solution because Stan was completely unhindered by it – his life almost stayed the same as it was before receiving an artificial heart. He only had to carry a backpack all the time. "It's just like a real heart, " he explained to CNN, "It's just in a bag with tubes coming out of you, but other than that, it feels like a real heart."
That is how Stan found himself in a really unique situation. In 2014, he became the first patient in Michigan ever discharged with a SynCardia temporary total artificial heart. He thought that he would need to carry his artificial heart for a few weeks as his brother did.
555 Days Without a Heart
Stan's brother Dominique also received an artificial heart, but he received a new heart only six weeks later. As the days passed, Stan also hoped that he would soon get a new heart, but days turned into weeks and weeks into months.
Stan managed to last an astounding 555 days without his real heart, and that is really an incredible feat. It was probably hard for Stan to wait for so long, but he wasn't alone. His family was there to support him and take care of him.
A Story of Success
Stan needed someone to bandage the holes where the tubes entered his body regularly, and that someone was his mother, Voncile McCrae. In an interview with CNN, she said, "We had to be careful so that he wouldn't get an infection."
Stan finally received a transplant from a human donor after carrying around the artificial heart for 555 days. SynCardia was a huge success. It allowed Stan to live a pretty regular life while waiting for a compatible donor, and it also made his recovery faster than expected.
Living With an Artificial Heart
With his life-preserving backpack on, Stan continued to play basketball and hang out with his children. "He really thrived on the device," Dr. Haft told the University of Michigan Health System. "This wasn't made for pick-up basketball. Stan pushed the envelope with this technology."
At a news conference, when Stan was asked to describe his experience, and living with a completely artificial heart, without his heart in his chest, Stan said, "It was an emotional rollercoaster." And it surely was. Imagine that you had to wait 555 days and walk around with two holes in your chest.
In the same interview, Stan also said, "I got the transplant two weeks ago, and I feel like I could take a jog as we speak. I want to thank the donor who gave themselves for me. I'd like to meet their family one day. Hopefully, they'd want to meet me."
Stan wanted to share his experience because he hoped that it would help other people who were in a similar situation. "Most people would be scared to go so long with [an artificial heart], but I just want to tell them that you have to go through the fear because it helps you," Stan said.
Inspiration to Other People
Stan also added a few more inspiring words, "I'm going home so fast after the transplant because it helped me stay healthy before the transplant." Dominique said he and his brother were grateful that they survived and that finally, they could live a normal life.
"I have an amazing brother," Dominique said. "He has been here with me since the beginning and has never let me down. ... I'm blessed to have him in my life."
Life After Surgery
Stan became free of his artificial heart, and now he could go back to his life. No more taking care of the tubes, no more bandaging, no more backpacks on his back. He had a new heart in his chest, beating without any problems.
When the journalist asked him what he was looking forward to do, now that he was finally free of artificial heart, Stan humbly said that he was looking forward to his upcoming trip to Michigan's Adventure for his daughter's birthday.
Things He Wished For
Stan also added that he was looking forward to taking a proper shower and getting back on the basketball court. However, the thing that bothered him the most during those 555 days was that he was unable to hold his children, and play with them the way his children wanted.
Stan was looking forward to being able to hold his three children again. "They're going to attack me," he joked. "They can't wait. They're going to be on the front, the back, my neck. They're going to be jumping all over me."
A Story That
The world's first self-contained artificial heart was implanted in a patient in 2001. One of the surgeons that performed that surgery is celebrated surgeon Dr. Laman Gray. Now, Dr. Laman is the Jewish Hospital chair in cardiovascular surgery at the University of Louisville, and he closely followed Stan's case. Dr. Laman said, "The technology that, temporarily, was a part of Larkin's body shows just how advanced artificial heart devices have become since the world's first self-contained artificial heart was implanted in a patient in 2001."
David J. Pinsky, the director of the University of Michigan's Frankel Cardiovascular Center, called Stan and Dominique "heroes." "You'll make a difference for a lot of patients," he said during a press conference. "You'll make a difference to the doctors of the future. We thank you for allowing us to share your story and your bravery in sharing it." And Stan is a true hero; his unique story and immense bravery will surely help many people who are struggling with similar problems and inspire them never to lose hope.