I am going to fight, and do everything I possibly can to have one more day with my son.
On the day Landen Bowers was born his father ran down to the hospital’s gift shop, bought his newborn son a stuffed lion, and placed it on the side of his bed. Landen was born with LEOPARD syndrome — a rare genetic disorder with significant cardiac abnormalities, severe hypertrophic cardiomyopathy being the most common. The doctors didn’t give him much of a chance. His parents feared the worst.
“When we were taking him home from the NICU after nine weeks of being there, the cardioligist said, ‘I just want you to know that he’s not going to make it to his first birthday,’” said Landen’s mother, Tammy Bowers.
Tammy was devastated. She received the horrifying news while standing at the hospital’s entrance. Landen was sleeping in his car seat beside her, and her husband was pulling the car around to take their son home for the first time.
“I told her, ‘I don’t want to take him home. I don’t want to wake up to my son dead,’ and she’s like, ‘Well, there’s nothing that anyone’s going to be able to do. It’s going to be quick,’” said Tammy.
So, they took Landen home. Just 10 days later, following an echocardiogram to monitor Landen’s progress, doctors told the Bowers their son was experiencing in-stage heart failure.
“They told us we could take him home and enjoy what little time we had left, or we could try for a long shot heart transplant,” said Tammy.
The Bowers were not ready to give up. They stayed in the hospital for four weeks, praying for a miracle. As they approached their fourth weekend in the NICU, doctors told the Bowers they should go home once Monday arrived. Hope was beginning to fade.
Meanwhile, in Iowa, a little girl’s heart stopped beating. Although the baby girl had passed away, doctors rushed to resuscitate the heart, hoping to use it to save another child’s life.
A heart that has stopped beating and needs to be resuscitated is considered to be “high-risk” for heart transplants. 17 families turned down this little Iowa girl’s heart before it finally made its way to Landen Bowers — just a day before the Bowers were supposed to go home.
“It ended up being the most absolute perfect heart for him,” said Tammy.
When the heart first arrived from Iowa, the donor family sent along a gift.
“The gift was a stuffed lamb that had been in the baby girl’s bed,” said Tammy. “It matched Landen’s lion perfectly. We have pictures of her holding that lamb. It was just such beautiful symbolism.”
Landen, whose middle name is Lion, has since had the opportunity to meet the father of the little girl whose heart now beats in his chest.
“Landen loves him,” said Tammy. “He calls him ‘heart dadda.’ He talks about him every day. He understands that that’s the dad of where his heart came from.”
According to Tammy, when Landen was first diagnosed with LEOPARD syndrome there were only 200 other diagnosed cases in the world.
“From what I understand, he is only the third child with this syndrome that has had a heart transplant,” said Tammy.
Landen was also the first to receive an incompatible heart transplant in the state of Utah.
“His blood type and his heart actually don’t match,” said Tammy. “They have found that kids under the age of one year don’t have the antibodies to reject an organ that doesn’t match. So we signed the papers, and he’s the first and only one that that’s been done around here. And he’s done really well with it.”
Landen is doing well, but Tammy will never be the same.
“It’s been life-changing,” said Tammy. “I know it probably sounds weird, and I don’t ever want my son to suffer anything, but I don’t know if I would ever change the things that I’ve learned, how I’ve grown, and who I’ve become as a result of this experience. I’m so grateful for that because it’s been an amazing experience to go through this.”
Tammy’s life has also changed to one revolving around regular hospital visits and consultations. These continual visits are what led Tammy to conceive the idea behind The Pocket Physician app. She soon realized how important it was for caregivers to be organized and able to record accurate information to relay to the doctors who were caring for their loved ones.
“Part of the reason for the app is to give parents a tool to advocate for their child,” said Tammy. “A huge part of the medical industry is placed on the caregivers. Everything that doctors rely upon is what we give them.”
A personal medical application meant to aid overwhelmed parents, nurses, or caregivers, The Pocket Physician hopes to eliminate mistakes and cut down on wasted time.
The app allows for charting and creation of graphs, as well as a stopwatch and video recording to track the patient’s progress easily. It also has a notes system where one can store important information for later reference. These notes can then be conveyed to the doctor or specialist, which might even speed up the treatment procedure.
“It is a lot of work. A lot of stress,” said Tammy. “Every day, twice a day, I check my son’s vital signs. I check his heart rate. Doctors rely upon us as caregivers to give them accurate and complete information, and if we don’t they can’t do their job. The app is not just a tracking tool — it’s a way to advocate for your child.”
When Tammy was in college, she earned a Bachelor’s degree in Child Development. She never dreamed she would one day start her own company.
“This was not a goal at all,” said Tammy. “I wasn’t ever expecting to do this, but I feel like this is what I should be doing.”
Tammy says a lot of people assume once you’ve received a heart transplant everything is fine and life goes on like normal.
“Heart transplants don’t last forever,” said Tammy. “They say a new heart will only last anywhere from five to 15 years. Transplants are just the start. It’s a trade. You’re trading one disease for the other.”
Landen has now had his new heart for four years. Tammy is friends with two families whose five-year-old children have already been through a second heart transplant.
“Every day we have with our son is a borrowed day,” said Tammy. “Statistically we have a 50/50 chance of him celebrating his 10th birthday.”
Tammy is currently in the midst of an Indiegogo campaign, trying to raise $8,000 to build the iOS version of The Pocket Physician app. There are eight days left in the campaign. At the time of this posting, she has raised just over $6,000. In reality, though, she’s going to need a lot more money than that to make this incredibly important app a reality.
“I am going to fight, and do everything I possibly can to have one more day with my son,” said Tammy. “To have a tool that can help with that is really important.”
To hell with objectivity: Tammy Bowers needs our help. She’s a first-time entrepreneur, compelled to build The Pocket Physician to help care for her beautiful son Landen, and to help parents and caregivers throughout the world to advocate for the ones they love most. She believes this app will help save lives.
LEOPARD syndrome could have easily shattered the lives of Tammy and Landen Bowers, but it’s impossible to break the heart of a lion.
Published 2/21/2014
