First adult ECMO treatment a successKarla Leavenworth was a healthy woman in her mid-thirties who was suddenly blindsided by near-death illness.
By Natasha Clark
Assistant Managing Editor
EAST LONGMEADOW Karla Leavenworth of East Longmeadow and her family know the importance of never giving up. After her siblings traveled to be at her bedside at MassGeneral Hospital for her last rites, their prayers were answered when a medical procedure typically used for newborns saved her life.
Leavenworth is the first adult at Boston's MassGeneral to receive extracorporeal membrane oxygenation (ECMO). She has spent most of 2008 in and out of the hospital and currently is in out-patient occupational and physical therapy. Last week she told Reminder Publications that she is just grateful to be alive.
"In a blink of an eye your life can forever change for the better or worse and for the better again," Leavenworth said in reflection. "I'm a very, very lucky girl."
In October 2007, Leavenworth's mother Janet found her in the foyer in status epilepticus, a life-threatening condition in which the brain is in a state of persistent seizure in her case she had a continuous seizure for as long as two hours. Leavenworth developed epilepsy about six months prior to the incident. A number of things can cause epilepsy. Leavenworth has micro adenoma (an extremely small benign tumor from glandular origin in epithelial tissue) on her pituitary gland. While it has not been officially determined whether or not this contributed to her epilepsy, Leavenworth named it as just one of many possible scenarios.
"I was brought to Mercy Hospital and they immediately intubated me and put me into a medically induced coma," Leavenworth recalled. "Dr. Leo Stemp, an ICU [intensive care unit] doctor at Mercy Hospital realized that I was slowly dying but didn't know why. Otherwise, I was this healthy woman and they didn't know why I was dying ... My kidneys shut down."
Doctors made the decision to have her transported to MassGeneral Hospital an act Leavenworth feels was only possible thanks to Friendly's Ice Cream co-founder Curtis Blake. She said MassGeneral did not take her insurance. According to her, Blake had donated a large amount of money to the facility in the past, which may have helped get her in.
"My parents' best friends are very good friends with him and his wife, Patty. Curtis is very humble and he got me into MassGeneral," Leavenworth said.
Doctors figured out that her illness started with a staph infection in her lungs and it spread like wild fire.
"I was not responding to any medicines or medical treatments," Leavenworth said. "I was in trouble. That's when I was read my last rites. My brother [Michael] took the red eye in from California. My three sisters [Gina, Julie and Debbie] from Massachusetts came. That's when they took them into 'The Room' in the ICU and said, 'she is going to die. She has a matter of hours. We don't know how many hours. So I suggest you say your goodbyes.' Somehow two pediatric surgeons found out about my case. I only had a one percent chance of survival ... They said, 'If she is going to die, we have nothing to lose.'"
The chance Dr. David Lawlor of MassGeneral's Children's Pediatric Surgical Services, was speaking of was ECMO. It is an advanced technology that usually functions as a replacement for a critically ill child's heart and lungs. The ECMO machine continuously pumps blood from the patient through a "membrane oxygenator" that imitates the gas exchange process of the lungs. It removes carbon dioxide and adds oxygen. Oxygenated blood is then returned to the patient. They removed blood from Leavenworth's jugular vein and pumped it back through her femoral artery in her groin.
"By putting them on this machine that actually does the work of the lungs, it allows the doctors not to inadvertently damage the baby while keeping the lungs alive," Lawlor said. "Adults have less success with the support because the underlying disease isn't usually as reversible."
Leavenworth received ECMO for 21 days and was in a coma for three months. She ballooned and gained a whopping 100 pounds in 24 hours due to the ECMO causing her capillaries to swell.
Her parents Janet and Bob, looked after her seven year-old daughter Taylor in her absence. They also stayed faithfully at her beside running their hands along her body and talking to her. Leavenworth has no memory of her coma. When she finally woke up, her muscles had started to atrophy, and in her mind it was still October. She joked that she woke up thinking she had to get Taylor's Halloween costume together. She had to relearn how to use her limbs, eat, even swallowing wasn't a possibility in the early days of her consciousness.
Eventually, she was transferred to the Weldon Center in Springfield where she continued intense therapy. In six weeks, with the aid of a walker, she walked out and headed home to her daughter.
"Body parts will strengthen with time and she'll probably get back to a state where she won't be continually subjected to viruses and break down," her father Bob said.
Leavenworth has a long road to recovery ahead of her, but she's getting there. Last week she drove a vehicle for the first time since her coma.
"My sister joked that I am like a cat with nine lives. She said, 'God doesn't want you yet. You talk too much,'" Leavenworth said with a laugh. "I just need to start forgetting how to be a patient and start learning how to live."