Kyla Davis’ heart is three sizes too big and if not for the five-pound batteries on her hips and the pump in her chest she would die.
Being tethered to her home via an electrical cord when the batteries are not in use is bad enough. Then there are the life-altering changes that come from the pump and batteries — the momentous life-style changes most people take for granted — like the ability to take a bath or just hop in the shower.
For Kyla, taking a shower is a process requiring lots of prep time to prevent the hole in her rib cage where the wires enter her body from becoming infected.
But beyond that, being unable to be the mother she wants to be to her three children is almost unbearable. She can’t pick up her nine-month-old son, Reagan, and she missed the first month of his life while he was cared for by Kyla’s mother as Kyla fought for her life in a Dallas hospital.
And then comes the days when something doesn’t go right with that life-giving pump in her chest and the fear of death grips her weakened heart.
“The darkest day was the first day I had a low flow on the LVAD (left ventricular assist device) — the pump in her chest that acts as the left side of her heart,” she said. “I have never had anything that clear from God before. I hear the word, ‘hope.’ How can we not look at our story and see God’s hand on it every step of the way. Maybe you don’t get the answer you want, but you can use the answer you get to go a little further.”
Undiagnosed
Kyla’s — and her husband Ryan’s — incredible journey over these past nine months began shortly before the birth of Reagan.
About a month before the due date Kyla began experiencing symptoms that didn’t match her previous two pregnancies.
“Looking back we can see all the symptoms, but at the time we didn’t realize what it was,” Kyla said.
In fact, those pre-birth symptoms were a major warning sign the Davis’s and the doctors overlooked because what Kyla was experiencing is a rare disease only known to affect one in every 2,000-3,000 pregnant women.
Had doctor’s caught the signs early, Kyla could have easily been treated with medication and the threat to her and Reagan’s life would have been erased. As it was that birth was in itself a miracle.
“It is a miracle he and I made it through child birth,” Kyla said.
It all began innocuous enough with Kyla finding herself completely out of breath just trying to carry on a conversation.
“I would become totally winded just trying to talk to someone,” she said.
Then there was her size. Kyla, a petite woman had swollen to huge proportions. Doctors and Davis family members alike wrote it off as the fact that Reagan was such a large baby — two pounds heavier at birth than either of the other children.
But Reagan wasn’t the full cause for Kyla’s incredible size.
“The night before we had him I almost passed out,” Kyla said. “I had a fainting, dizzy spell that hit like a ton of bricks. It did not feel like normal labor. I didn’t know what was going on. I just didn’t feel right.”
The family rushed Kyla to the ER and doctors sent her home hours later unable to determine anything was wrong.
LEVI HILL/NEWS-SUN
A life-threatening birth
The next day Kyla went into labor. Looking back on it, the Davis’s can see God’s hand at work because Kyla had the baby all-natural, no pain medications. They didn’t realize it at the time, but having the birth that way turned the birth into an almost certainly fatal event.
“When I gave birth my amniotic fluid flooded the hospital,” Kyla said. “It was so much that had to move me to another room.”
What doctors and the Davis’s didn’t know at the time was that there was a very serious reason for all of that fluid — Kyla’s heart was failing.
As the heart fails fluid builds up in the body, usually beginning in the feet. With Kyla, her body moved that fluid to her uterus and encased her unborn son in more fluid than normal. It actually was another miracle the family didn’t realize was happening until later.
“We know, looking back, that it was a miracle we survived,” Kyla said of herself and her son.
The excess fluid eased childbirth and for Kyla’s then-failing heart that prevented her from going into cardiac arrest, something the couple now knows has happened to other mothers.
“Lot of times mom and baby die in childbirth and the doctors don’t know why until the autopsy,” Ryan said.
It was still a difficult birth for Kyla and it sapped much of her strength. She went home a few days after the birth and instead of recovering things began to get worse.
The cause
“Those first five weeks post partum was bad,” Kyla said. “I couldn’t lay down at night without chest pain. I was swelling. Walking would cause me to hurt. I could hear a crackling in my ears and I was nauseous all the time.”
What no one knew was that Kyla was slowly dying from heart failure, a rare form that affects only pregnant mothers called Peripartum Cardiomyopathy.
“I was living in end-stage heart failure for four weeks,” Kyla said.
For weeks one doctor after another wrote off the symptoms as post-partum anxiety as Kyla suffered what seemed like anxiety attacks but were instead moments of her heart going into arrest trying to keep the blood flowing to her organs.
Finally, came a Friday and a third doctor who ordered a new battery of blood tests.
“The swelling begins in your feet and it had moved into my face by this point,” Kyla said. “I hadn’t eaten anything in 10 days. I couldn’t keep any food down.”
On Monday, the results of the blood work came back and came a call from the doctor telling the Davis’s to get to her primary care doctor immediately.
“My liver was failing at that point,” Kyla said.
She went to see her doctor and the doctor knew something was wrong from the blood work, but didn’t know what and told Kyla to go to the ER. She was so weak she had to be wheeled over in a wheelchair.
What came next pushed the boundaries of survival as Kyla sat in the hospital for 24 hours while doctors tried to determine the cause of her symptoms.
She didn’t fit the profile for a heart failure patient and they looked at everything under the sun, including a possible septic infection and began pumping her body full of fluids.
By the time they realized their mistake Kyla’s blood platelets had fallen to a level of 30,000. Anything under 100,000 means your blood won’t clot if cut and any injuries — internal or external — could be fatal.
“If I had even a small cut I could have bled to death,” Kyla said.
Doctors finally ordered a BNP (brain natriuretic peptide) blood test that measures the levels of a certain protein produced by the brain that can indicate heart failure is happening.
By chance or by way of another miracle, there just happened to be traveling cardiologist at the hospital that day, a retired doctor from Pennsylvania who had seen PPCM before.
He was consulted on Kyla’s case and immediately knew what the test meant. She was only the third case he’d seen in his career and by far the worst.
Kyle was immediately flown to UMC hospital in Lubbock. There were talks of installing the LVAD unit in her chest immediately because her heart was already down to 10 percent function. However, her low platelet levels and the insurance company stepped in the way.
The nightmare
Now came the nightmare for the Davis’s as they juggled insurance company hurdles, Kyla’s fragile state — her kidneys, lungs and liver were failing too by this point — and the need to do something before her heart failed completely.
She had gone into cardiac shock and couldn’t go into surgery.
Before long Kyla was taken to a cardiac ER unit at Baylor Medical Center in Dallas where she and her husband spent almost two months.
For weeks they had been told it wasn’t her heart and now doctors said it was. It was frustrating and frightening. Kyla hovered on the edge of death and began a slow recovery, but the road was longer than they could imagine.
Eventually doctors were able to stabilize Kyla and that’s when they started talking installing the LVAD.
“When we first heard about the LVAD we thought, ‘Oh God no. It can’t be this bad,’” Ryan said.
The family didn’t want it. It meant a major life change and it was as scary as the heart condition itself in its own way.
The LVAD, a pump that bypasses the left ventricle of the heart, allows the heart to rest and serves as the heart. The reason for it is to allow Kyla’s heart to rest, to hopefully recover and perhaps, someday, provide her a shot at her life before PPCM.
“The surgery and recovery was brutal,” Kyla said.
The family kept hoping the heart would heal before an LVAD was needed, but that didn’t happen.
“It almost became everything you can to avoid it to, ‘Please give it to me,’” Kyla said.
Doctors eventually installed the LVAD and then began weeks of training for the couple on how to live with the device as they waited for Kyla to improve enough to go home.
Finding faith when it’s lost
The long days at Baylor Medical Center were like living in a bad dream for the couple. Separated from her children and her newborn, Kyla reached a point where it was breaking her sanity and her faith.
Her family was huge supporters but so was her church and they gave her the support to keep fighting. But in the darkest hours faith and friendship seem to fade to a flicker when the darkness closes in. It was in those moments that Kyla found a message from on high delivered to her by one of the male nurses caring for her in the hospital.
“It is easy to have faith when you don’t go through trauma,” Kyla said. “When you go through hard things you think you have to put on a perfect faith front and the reality is that is not how it works.”
“It is very hard for them to stabilize your heart,” she said of the doctors’ work to save her life. “It is not a scientific checklist on how to do this. It is very much trial and error.”
While lying in a hospital bed chafing to be with her children and letting grief and those feelings of the unfairness of it all wash over her, Kyla’s nurse offered her the advice that helped her pull through.”
“He said, ‘You process. You cry. You get angry. Because what you are going through is real. It is hard. It is not fair. Don’t let anyone tell you to suck it up and not feel these things. Feel these things. Process and find a way to keep moving forward,’” she said.
For Kyla those words were an epiphany.
“I realized I could still believe in God, but I can still have bad days,” she said.
It was then she began to see the LVAD in a new light. The pain, the wires, the clunky battery packs on her hips — they weren’t her downfall. They were her saviors.
“They allowed me to have my life back,” she said.
It wasn’t the same life, but it was a life with her children, her husband and there was now hope.
“At first it was a big adjustment,” she said. “Some days I wanted to just cut the cord because I didn’t think I could live like this. I didn’t have the freedom I had before. I have had to learn to feel OK about looking different, about living a different life.”
From the darkness, hope
Now, more than nine months since their journey began, the Davis’s have found plenty to be thankful for, even the clunky, life-changing LVAD.
“We are thankful she is alive and thankful for the technology,” Ryan said.
“A lot of it was just having to trust God,” Kyle said. “By the time we realized what was going on, so many miracles had already happened.”
She and Reagan survived childbirth, the right doctor was in the hospital at the right time, Kyla survived an even closer brush with death and Reagan is healthy and strong and Kyla … well Kyla is beating the curve.
“From day one I have been textbook, and probably ahead of curve on bounce back,” Kyla said.
Some days still feel like setbacks when the LVAD malfunctions or when Kyla longs for the life she had before, but that’s when the message of hope rings in her ears.
“I’m still in heart failure,” she said. “Without the LVAD I am not here. This isn’t easy, but you remind yourself that you’re still here. It is OK to be emotional to have a bad day. But you find a way to find the good. You find a way to see the small victories. Find a way to keep moving forward.”
Part of that moving forward is Kyla’s work with her new foundation, Expecting Hearts, where she is working to raise awareness about PPCM and working to urge doctors and hospitals to make the BNP test a part of prenatal care to catch cases of PPCM before they become life-threatening.
“If you can catch it at greater than 35 percent, then you usually just need medications and there is a great chance of recovery,” Kyla said. “I want to let people learn from my story. The big thing that has helped me is learning to process it and pour back out and make good come from it.”
And another part of that moving forward is keeping the faith and having hope.
“The hope is my heart will recover and at some point I can have the LVAD removed,” she said. No one knows the odds that her heart will recover, but it could happen and that’s another place where Kyla finds hope.
“God causes everything to work for the good,” she said. “There is hope for the future. Hope that it is going to get better. Hope that I am going to use this for the good. Hope that I am going to help other people. Hope that I am going to get to see my kids grow up and hope for a good life. We know it is going to be a different life, but we hope we can make it a good life.”
To learn more about PPCM and Kyla’s journey, visit her foundation at www.expectinghearts.com.
Levi Hill can be reached at managingeditor@hobbsnews.com.
