Sharon Harris has spent much of the past 98 days traveling back and forth from her suburban home in Chicago to Alabama, trying her best to maintain her job and family, and care for her 18-year-old daughter Michelle Harris.
Michelle, an honors student at Proviso Mathematics and Science Academy in Forest Park, Illinois, and high school tennis star at Proviso West High School, arrived at UAB Hospital on Christmas Eve. Michelle was on a ventilator, receiving maximal support to keep her alive. A rare multisystem autoimmune disease known as granulomatosis with polyangiitis had Michelle clinging to life when she arrived via UAB’s Critical Care Transport Service.
“She coded in the hospital the day before Thanksgiving and two other times after that while in Chicago,” Sharon Harris said. “The Chicago doctors had given up hope. They told me she wasn’t going to make it.”
Doctors at Chicago’s Rush University Medical Center had placed Michelle on ECMO, or extra corporeal membrane oxygenation, after she was transferred there in November. ECMO is a technology that uses a portable heart/lung bypass machine to take over the function of those organs, allowing the patient’s sick organs to rest and, hopefully, heal. Michelle, who had the device placed through her neck and groin, was cannulated on ECMO for six weeks. She was on so much medication that she couldn’t walk, couldn’t eat, and was in and out of consciousness. It appeared she needed a lung transplant to survive, but in her state, Michelle was unable to be put on a transplant list.
Instead of letting Michelle pass, her mom encouraged doctors at Rush to see what else could be done. They reached out to other medical centers around the country, and the University of Michigan told them to contact UAB. “Rush has an established and well-run ECMO program, however they do not do lung transplants,” said Charles Hoopes, M.D., chief of UAB’s Section of Thoracic Transplantation, who visited Chicago to assess Michelle and see if she might be a candidate for transplant.
“Michelle was referred to us because of our experience with ambulatory ECMO as a bridge transplant,” Hoopes said. “We decided to offer her a transplant at UAB given the low likelihood of recovery she faced. The difficulty in this is having the capability to take very sick patients like Michelle and create a functional person who can responsibly undergo the rigors of transplant.”
And now, 98 days after arriving at UAB, Michelle Harris is set to head back home to Chicago tomorrow after a miraculous recovery, which included no transplant. ECMO, Hoopes said, essentially acted as a “platform for regenerative medicine” in this instance, giving Michelle’s lungs the rest they needed to heal. Along the way, Michelle has made many new UAB friends, including members of the Cardiovascular Intensive Care Unit, cardiothoracic transplant and medical music therapy teams. She’s still on track to graduate with her 2016 class on May 21, and she fully intends to attend her prom on May 6 — two dates she had circled on her calendar long before she fell ill this past fall.
“Those dates are very special to me,” Michelle said. “Ever since I started my senior year, I’ve been looking forward to those two days. I can’t wait to get home, continue to get better and see my family and friends again.”
‘I’m a fighter’
It’s clear in conversation with Michelle how much she admires her mom. It’s who she learned to draw her strength from to face difficult battles.
Sharon was diagnosed with breast cancer more than a decade ago. Michelle remembers how her mom was told it was going to be difficult for her to survive. Michelle, though only 7 at the time, even remembers a funeral being planned for her mom. But here it is, 2016, and Sharon is 11 years cancer free.
“I always told my mom that I was like her, that I was a fighter,” Michelle said. “She was fighting for her life 11 years ago, and I’ve been fighting for mine. We both consider ourselves fighters because even though people thought we would die, we didn’t.”
Hoopes has a particular interest in what he calls pediatric salvage patients — patients like Michelle who are placed on ECMO as a bridge to transplant.
Hoopes evaluated Michelle in Chicago, and though she was in and out of consciousness at times, she assured Hoopes if he took her case, she was going to do everything she could to help him get her to transplant.
When Michelle arrived, the ECMO team — led by Enrique Diaz, M.D., associate professor in the Division of Pulmonary, Allergy and Critical Care Medicine — transitioned her from the ECMO circuit used in Chicago to a different form of ECMO that accessed her vascular system via her chest.
“Because Michelle had been on a ventilator for weeks, largely sedated and largely bed bound, it’s fair to say they had run out of options they felt were viable,” said Keith Wille, M.D., associate professor of medicine in the Division of Pulmonary, Allergy & Critical Care Medicine. “One of the strengths of bringing her to UAB was so that she could be awakened and engaged in physical therapy, and that wasn’t possible on the peripheral, groin ECMO circuit. We gradually got her centrally cannulated through her chest and got her into a position where she could wake up better, participate in therapy and rely less on sedating medicines.”
Sharon, who has been a nurse (including in critical care settings) for more than 30 years, noticed an improvement in Michelle’s condition soon after the ECMO change. The medical team began weaning her from the medication she was on and her prognosis began to change.
“What Dr. Hoopes did and what the nurses and that staff did was really something to see,” Sharon said. “Michelle is still here for two reasons, the first being the grace of God. The second is because of the care she received at UAB and the way they take care of their patients. I have never seen the kind of care that was given to Michelle up here where we live. I’m not trying to say anything bad about northern medicine at all, but they have a southern touch at UAB combined with modern medical technology that also combined with Michelle’s will to live, and that’s what it took. It took all of it. They wouldn’t let her give up, and she didn’t let herself give up.”
Hoopes is insistent that ECMO patients who are potential candidates for transplant hit three major goals. First, they must have the determination, which Michelle assured him she had. Second, they have to get up and walk. And third, they must eat three square meals a day. Michelle hit every goal.
“One of the reasons Michelle has done well is because she’s been very focused on her own care and her life,” Hoopes said. “That’s an important skill set for young patients who are trying to get to transplant — the ability to really embrace your situation and to see this as an opportunity to move on and do what you want to do is pretty extraordinary.”
The transplant that wasn’t needed
Patients on ECMO often have to have what is known as a circuit change. This is when all of the tubing and other essential items have to be changed to prevent the blood from clotting.
These circuit changes happen frequently, and they are not without risk.
“It’s usually a very traumatic thing for patients,” said Shelby Bryant, a registered nurse in CICU and Michelle’s nurse for almost the entirety of her stay at UAB. “A patient’s oxygen rate can drop to the 50s, 60s or even lower.”
The reason? During these circuit changes, the ECMO machine is no longer performing the function of the lungs. The lungs have to work — or not — on their own as the change is being made. The process can take up to a minute to complete.
Last month, the care team had to do an ECMO circuit change on Michelle. When the team disconnected the ECMO to make the change, Michelle’s lungs — which X-rays had previously shown to be solid white, indicating that they were not working — picked up for the ECMO machine. She never gasped for air, never felt short of breath.
“Her lungs were doing 100 percent of the work,” Shelby said.
All of the hard work Michelle had put in with Shelby to become eligible for a transplant, all of the OR procedures she endured, all of it was worth it for that moment. Her lungs were recovering on their own.
“A lot of people thought I wasn’t going home until I had a lung transplant,” Michelle said. “But then they saw that my lungs were healing on their own. My mom would put this anointed oil over my chest, and we believe that God healed my lungs. I remember Dr. Hoopes kept saying it was going to take a miracle for my lungs to heal, and I remember him saying that they weren’t too optimistic that they would, but they did. They did.”
“ECMO did its job, giving her lungs time to heal on their own. I believe the jury is still out on whether she will eventually need a lung transplant,” Wille said. “She’s on a low rate of supplemental oxygen. She needs to continue to get stronger, and she will need to continue on various treatments for granulomatosis. But she now has the ability to do these things back home, which is great for Michelle and her family.”
Enduring with new friends
When you’re almost 700 miles from home for three months, it’s tough on everyone. It’s been a difficult time for Sharon, who wishes she could have been here more. The same is true for dad Michael, a Florala native, sister Nikki and brother Sammy — all of whom have visited when they can.
Michelle has missed all of her classmates, friends and teachers at Proviso, too. Michelle, who struggles to speak as she continues her recovery, still won’t let you leave the room without making sure you understand how thankful she is to her school for all of the t-shirt sales, bake sales and other charity events they have held to help pay for some of her medical expenses. They’ve also done their best to be there for her emotionally when she’s needed it, also not an easy task from such a long distance.
That distance and separation led to some rough days in the hospital. On those days, she would ask Shelby for a pep talk. Shelby would tell her how they were going to get through that day, or to push to the next distance for their daily walks — 100 feet, 300 feet, 600 feet. Eventually, Shelby was walking with Michelle downstairs to the hospital Starbucks.
“Shelby gave me a lot of encouragement and happiness,” Michelle said. “She made me stronger on those days when it was hard. She encouraged me to keep believing that I’m going to go back home one day.”
“We’ve become fast friends,” said Shelby, who has Michelle’s senior photo on her computer stand in CICU. “I can’t imagine how difficult it is to be as sick as she has been and so far from home, from family who loves her and would have loved nothing more than to be here with her every step of the way. It’s been such an honor to stand in for them.”
During Michelle’s stay in UAB Hospital, as she improved and got stronger, she was adamant that she wanted to keep plugging through on her schoolwork, especially her English — the last class she had to pass to graduate on time with her class this May.
Chrissy Boone, cardiothoracic transplant coordinator, offered to help Michelle with her class and coordinated with Proviso Mathematics and Science Academy Principal Bessie Karvelas to make sure she kept up.
“You could tell the school administration had a deep investment in Michelle, and they were quick to arrange an online class for her,” Boone said. “Michelle was excited, but had some hesitancy about being able to do it alone. She was looking at tackling Shakespeare’s “The Tempest” all by herself. I started coming to her room to help her learn how to do school online. I was so astounded by her insight, intuition and ability to think critically and deeply. We started having really great discussions about “The Tempest,” and I was truly inspired by what she was taking from the story. I’ve been so proud to work with her and get so much energy from spending time with her. She is a remarkable young lady.”
Wesley Hyde, a music therapist with UAB’s Spain Rehabilitation Center, also has visited Michelle frequently to teach her some basics on how to play the acoustic guitar. “I did it for my dad,” Michelle said. “He taught me how to play bass guitar, and I wanted to learn how to play acoustic guitar for him.”
But now Michelle is going back to Chicago. She will be admitted to a hospital there for the time being as her surgical wounds continue to heal and as she continues to fight for her health to improve. “I love her so much, and I’m going to miss her dearly,” Shelby said, “but I’m so excited for her, excited that she gets to go home again.”
There is much to do between now and May 21, when she graduates and begins to look toward the fall when she will begin the process of becoming a nurse, the same journey her mother took. But before graduation and before the summer, before her first semester of college begins, there is May 6. That other important date to Michelle. Prom day.
Just last week, the owners of the Homewood dress shop Bella Bridesmaids — Charlotte and Jeanna Lee Thompson — heard about Michelle’s plight from a friend, and of her desire to get back home and attend her prom. The Thompson sisters insisted on providing Michelle with a dress for the prom and sent a dozen dresses to the UAB CICU for her to try on. “They are so beautiful,” Michelle said. “I’m still trying to decide which one to wear.”
Michelle’s mom, sister and brother have been working feverishly to pick the right young man to escort her. “She’s so precious to us, and she has three eager chaperones aiming to pick the right guy,” said mom. “She probably won’t be able to do as much as the others that night, but she will hopefully, at least, be in attendance. UAB has certainly given her a fighting chance.”
Sharon and the entire Harris family say they are forever grateful for the entire care team who were willing to help Michelle fight to live.
“She is a miracle child, and everyone involved in her care at UAB is a part of that miracle,” Sharon said. “They were placed in her life to help her achieve what everybody up here thought was impossible.”
“The people here are adventurous, fun, lovable,” Michelle said. “I’m so blessed to have had them as my caregivers, and I’m thankful. They gave me a chance and didn’t give up on me.”