Most 16-year-olds wish for a car for their birthday, but not Jacob Smith from Mukilteo, Wash. Jacob‘s wish was for a heart. Fortunately, he didn’t have to wait long for his wish to come true. He received a call from his doctors on Saturday, June 6, 2015. They had a match! He would receive a heart before he turned 16.
“I couldn’t have ever imagined that this would be our story, but here we are,” said Angela Smith, Jacob’s mom. “It was on a Thursday when Jacob got sick, a Thursday when he had open heart surgery, a Thursday when he was put on the transplant list, and now on Thursday, June 18, he’ll celebrate his birthday with a new heart.”
A diagnosis they ‘never saw coming’
Jacob’s journey to get a new heart started in April, when he began complaining of tightness in his chest. He had a cough and some drainage, but his symptoms were more consistent with a common cold than a serious illness.
The next morning, Jacob was feeling short of breath and tired. He made a trip with his father to their local clinic in Everett, Wash., to get his lungs checked out.
“His heart rate was elevated, but we thought it might have been caused by anxiety,” said Smith. “By the end of the visit, his heart rate was much lower. The doctors gave Jacob an inhaler to clear his lungs and sent him on his way.”
But Jacob kept deteriorating. His lips became pale, he wasn’t eating normally and he was so exhausted he couldn’t get out of bed.
“Something inside of me pushed me to take him back to the clinic,” said Smith. “I remember feeling so helpless. Mother’s intuition took over.”
Jacob was sent to the emergency room where doctors recommended he be transferred to Seattle Children’s Hospital by ambulance.
“When we arrived at Seattle Children’s we were immediately greeted by a swarm of doctors and nurses,” said Smith. “I’ve never seen that many doctors in one place before. That’s when I knew something was really wrong.”
Jacob was taken to the Intensive Care Unit (ICU). Tests were performed to figure out what exactly was making Jacob so ill.
“When Jacob arrived, he was really sick,” said Dr. Michael McMullan, a pediatric cardiothoracic surgeon at Seattle Children’s. “He was suffering from pain in his abdomen. Originally, we thought it could have been appendicitis, but after evaluation from general surgeons, it became clear that something else was going on. The diagnosis changed more toward heart failure.”
“It was an out of body experience,” said Smith. “The doctors began asking questions about Jacob’s heart and all I could think was, ‘He’s never had any problems with his heart. He needs his heart to live. It can’t be his heart.’ At that point, I put all my trust in our doctors.”
Fixing a failing heart
Jacob was moved to the Cardiac Intensive Care Unit (CICU) and was diagnosed with dilated cardiomyopathy, a disease of the heart’s muscular wall that causes the heart muscle to weaken and the heart to become enlarged. Cardiomyopathy reduces the heart’s ability to pump blood effectively and can lead to congestive heart failure.
“When they said heart failure I couldn’t believe it,” said Smith. “You think of older individuals when you think about heart failure, not a 15-year-old, and not my son.”
Doctors tried to help Jacob’s heart heal, but those efforts didn’t work. A ventricular assist device (VAD) was the best treatment option for Jacob. A VAD is a mechanical pump a surgeon implants either inside or outside a person’s chest. The device can be used as a bridge to transplant for patients waiting for a heart.
Jacob’s team of doctors decided to implant a newer type of VAD in Jacob, the HeartWare HVAD, a device with a slightly smaller pump than other models, and one better suited for teenagers. Jacob is only the second child to receive the HeartWare HVAD at Seattle Children’s.
“As technology changes, these VADs become smaller and safer,” McMullan said. “They become so easy that the kids who need them can have a good quality of life outside the hospital while waiting for a heart.”
Next steps outside the hospital walls
Thanks to Jacob’s VAD, he was able to leave the hospital while he waited for a heart transplant. Seattle Children’s has one of the best waitlist mortality rates among pediatric heart transplant centers, as reported to the United Network of Organ Sharing, so Jacob’s chances of getting a heart in time were good.
“We do a lot of transplants,” said McMullan. “We’ve done 12 heart transplants just this year and have the most experience in the Pacific Northwest. People come from Asia, Hawaii, Montana and Idaho because we have expertise in taking care of kids with heart failure.”
Getting the call
Almost two weeks before Jacob’s birthday, his wish came true. On Saturday, June 6, 2015, they got the call. Jacob had a match.
That night, he went into surgery.
“We can’t thank all of doctors and nurses enough for what they’ve done for us,” said Smith. “They saved Jacob’s life more than once and have always made us feel so included and comfortable in his care.”
Jacob is doing great. He will celebrate his sweet 16 with a new heart.
The only question that’s left to be answered is what else will Jacob wish for when he blows out his candles on Thursday night? It would be hard to imagine a present that could top the gift he already received.
