There could hardly be a more All-American teenage love story: Lillian and Rudy Ross met in a Minnesota high school shop class, and their first kiss was in a Hardee's parking lot. They were high school sweethearts destined to become the parents of an adorable, chubby-cheeked infant – but no one could have guessed, when their romance commenced, that they would also give the gift of life to half a dozen other people, including the recipient of an incredibly rare face transplant, in the wake of unspeakable tragedy.
Lillian was forced to make the heart-wrenching decision following Rudy's death in June 2016, when she was eight months pregnant. Now, as their son Leonard gurgles happily across the table in the care of his grandmother, she recounts the day their lives changed – and she saved multiple others.
Even in her grief and shock, she was committed to following Rudy's wishes for organ donation – and, most importantly, she was doing it for the baby son she would soon welcome into this world.
'I just wanted to show him, later, down the road, all the people his dad saved,' she says.
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Rudy and Lilly Ross enjoyed a sweet, typical Midwestern teenage romance before he proposed by a lake and they got married on their second anniversary in October 2015
Lilly made the brave decision to donate her husband's face when he proved a rare match for a man awaiting a transplant
Lilly was a junior in high school and Rudy was a senior when the couple first met; they shared a love of hunting, and he actually asked for her help building a dog box. She did it for him before he could manage it himself, she proudly explains, and a friendship – and later romance – blossomed from there.
'He grew up out in the country; I grew up in town,' says Lilly, now 20, who currently resides with her infant son in Windom, Minnesota. 'They're completely opposite, pretty much.'
She was drawn to Rudy's personality, however; she starts to tear up when she's reminiscing about her late husband. They dated in typical Midwestern teenage fashion, hanging out with mutual friends before Rudy – on a way to a hunting trip in nearby Nebraska – called her up and asked her out.
'He could be quirky and awkward with me and just pretty much be himself – and he didn't have to hide that from me,' says Lilly.
She already had a crush on him when he called her on his way to Nebraska and asked her to be his girlfriend: 'I was kind of by myself for that first week we were together; he was constantly texting me while I was in class,' she laughs.
Lilly was eight months pregnant when she lost her husband - and said she made the decision to donate his face and other organs so she could one day show their son how many lives his father had saved and changed for the better
Leonard, the son of Rudy and Lilly, is now eight months old
But the relationship grew stronger and they eventually moved in together; they were down by a favorite lake when he proposed.
And it was when they first got their own home together that Lilly knew he was 'the one'.
'Pretty much, it's when I knew it was him,' she says.
They got married on their second anniversary, in October 2015 – although their relationship hadn't been without its hurdles. The couple had already suffered a miscarriage, and when Lilly found out she was pregnant with their second child, it was hardly to be less stressful.
She was, she says, initially told she had ovarian cancer when presenting with abdominal pain – before she got a second opinion and took a home pregnancy test which revealed she was expecting Leonard, now eight months old.
She and Rudy were over the moon, particularly when further tests indicated the pregnancy was viable. She was working two jobs at the time, and the young couple were trying to make ends meet.
'It just happened, and we weren't going to do anything about it, really; he's here, he's here,' she says. 'I was actually excited after we had our anatomy scan to figure out what he was – and we knew there was no chance of randomly just losing him like that. I got really excited.'
Rudy and Lilly were thrilled to find out that that she was expecting a baby, especially as the couple had previously suffered a miscarriage, and they were planning for the birth at the time of his death
Lilly is raising Leonard as a single mother with help from relatives; she says the organ donation process was longer than expected but ultimately worth it to help other families
Lilly plays with Leonard at a restaurant in Windom, Minnesota, where she and her son live; she was initially worried that the face transplant recipient would look too much like her husband but was assured that would not be the case
Lilly says she fell in love with Rudy's 'quirky' personality and the fact that he could be himself around her
They planned happily for their son, but it was when Lilly was eight months pregnant that Rudy's latent depression would come to a head. She had known he was struggling, at times, but there was no indication of just how serious the condition had become.
'I didn't think it was as bad as it was,' she says. 'He kept to himself quite a bit; he didn't really talk about his feelings and stuff. That's why I didn't know how bad it actually was.'
There were family issues, she admits, but she and his brother were preparing to unveil Rudy's 21st birthday present when he unexpectedly took his own life.
They had got him a racecar, but she and Rudy were fighting. She told him to wait outside and cool off, and she was buckling her nephew into a car when she heard Rudy fatally shoot himself.
'I was actually standing next to the truck when he did it,' she says, trying to compose herself. 'As I was getting him [her nephew] buckled into the car seat, I heard the gun go off – and I called the chief in town – and I was just like, 'I need an ambulance.' He's like, 'Are you in labor?' I was like, 'No – Rudy just shot himself.' He was there within 45 seconds of getting off the phone with me; the ambulance was there two to three minutes later.'
He was driven to a local hospital and then taken by helicopter to Sioux Falls, an hour and half drive away.
Lilly – at eight months pregnant, and in a total panic - was also being monitored closely. The medical staff was worried she would go into early labor or other distress – before she was allowed to follow her husband to Sioux Falls. She traveled across state lines with friends to find out that further test results were not promising; Rudy was declared dead at 2.17pm on Tuesday, June 7, 2016.
Lilly was in complete shock.
'I couldn't even be in the room; I had to walk out,' she says. 'I went outside, sat by myself for a while and then I went back upstairs and I just sat there – I didn't do anything.
'Then they came to me about 5, 5.30 – that's when we had that first initial conversation and I'm like, 'I'm totally for it,' she says about transplants, citing her husband's wishes. He was a designated organ donor.
'I'm like, 'Well, he's made his choice – I'm not going to go against it'. When he went to re-register his license, we had actually talked about it. He was like, 'What's the difference?'
She said: 'If you're a donor, I don't have to make the decision – you've already made it.'
Lilly says she grew up 'in town' while Rudy grew up 'in the country;' he was an avid hunter and they enjoyed going on trips with their friends, in addition to dates at the movie theater and bowling alley
Rudy and Lilly first met in a high school shop class when he asked her for help constructing a dog box for hunting
Organ donation laws in all 50 states mandate that an organ donor's wishes cannot be overruled by a family – though the process is much easier for all involved if relatives support their wishes and the actions of medical staff. As soon as a patient is near death, hospitals notify local organ donation organizations; in this case, it was LifeSource, the Midwest non-profit. They liaise with families and match donors with recipients; each donor is screened for 'every opportunity to give,' says Rebecca Ousley, LifeSource communications manager, who arrived at the hospital the evening Rudy was declared dead to speak with Lilly and other family members. The screenings are not only for solid organs (heart, kidney, liver pancreas), eye and tissue donations, but also for newer and more complex Vascularized Composite Allografts (VCAs), such as hand and face, where the 'organ' is made up of different tissue types which may include skin, bone, muscles, blood vessels, nerves, teeth, nails and connective tissue.
In an historic development for LifeSource and the medical staff involved, Rudy came back as a match for a highly rare procedure: a face transplant.
Such a donation, as with all VCAs, is separate from a standard donor registration – and requires authorization from family.
Heavily pregnant, bereaved and in shock, Lilly was committed to saving lives after the loss of her husband's – especially to one day show their son, Leonard, the people his father had saved. The idea of a face transplant, though, had not crossed her mind.
She had already agreed to donate other organs – the typical liver, heart, pancreas which most people think of – but then a staff member sat her down to explain 'we have this once in a lifetime opportunity for Rudy and Andy' – well, I didn't know his name at the time.'
The facial transplant recipient would be Andy Sandness, a 32-year-old who had also tried to take his own life 10 years previously – and immediately regretted the decision. He survived, but his face was left absolutely shattered. A team at the Mayo Clinic in Minnesota told him that, if the ideal donor appeared, they could perhaps perform a facial transplant, which has been done only a handful of times around the world.
Andy tried to take his own life and immediately regretted the decision; while he survived, he was left with devastating injuries (left) before Rudy's transplanted face gave him a new lease on life (right)
Friday, June 10, 2016
10.16am – Rudy arrives at Mayo Clinic
11.53pm – Surgery starts on Rudy
Saturday, June 11, 2016
12.30am: Surgery starts on Andy
Nerves mapped on both Rudy and Andy
Sunday, June 12, 2016
3.14am: Donated face arrives in Andy’s room
4.30am: Bones plated together
6.00am: Vessels reconnected
9.00am: More plates placed on the mandible (jaw bone)
12pm: Problem detected with vessels, fixed by early afternoon
Evening: Nerves reconnected as well as other structures: salivary gland ducts, incisions made in mouth, skin put back and trimmed, eyelids reconnected to new nose
Monday, June 13, 2016
9.02am: Andy leaves OR
The first suggestion to Lilly about such a procedure involving her husband Rudy's face alarmed her; she says she didn't want to be 'walking on the street and randomly seeing him.'
'I was leery at first, if he'd look like him, and she's like, 'No, he won't look anything like him.' And I'm like, 'I'm for it – do it.'
'There wasn't much to decide; it was just a yes or no on the face transplant. I was for it, because he had chosen for the rest of him and I'm like, 'If he needs it, and can use it – take it.' That was my outlook on all of it, pretty much; if somebody else can use it, go for it.'
On the afternoon of Thursday, June 7, 2016, she gave her whole-hearted consent.
At around 11am the previous day, 240 miles away in Rochester, Minnesota, Dr Samir Mardini was in a meeting when he received an unexpected phone call. He had placed a patient on the face transplant list four and a half months beforehand, and he was being flagged about a possible donor. More testing needed to be conducted, and Dr Mardini tried not to get his hopes up; the likelihood was slim that the first possible donor would turn out to be a perfect match.
He had become very close with his patient, Andy Sandness, a kind man living with extreme deformity who had undergone extensive testing to approve him as a candidate for the surgery. Dr Mardini had actually been on call in 2006 when Andy came in with his initial gunshot; the plastic surgeon did all the reconstruction work at the time - so he and Andy had been on this 10-year journey together.
Dr Mardini and his team had been practicing the facial transplant surgery for years; they spent 50 Saturdays in the anatomy lab ensuring they could get the procedure just right.
They were ready, and so was Andy. But they suspected the wait for a donor would be long, considering how many requirements would have to be met.
The donor had to be of similar age, blood type and skin tone and test negative for the Epstein Barr virus – which causes mono – because Andy was negative; using a donor who tested positive would increase the risk of lymphoma and other blood cancers. Further serology tests had to be conducted to ensure there would be no adverse reactions between donor and recipient.
Even if a good match was found – most crucially – the donor's family would have to give permission.
Dr Samir Mardini, left, was on call when Andy suffered his initial 2006 gunshot wound and did all the reconstruction at the time; he spent years practicing the face transplant surgeries with his team before placing Andy on the list just 4.5 months before Rudy proved a rare match
Dr Mardini carries Rudy's donated face from the operating room where doctors worked on Rudy to the nearby operating room to which Andy had been taken
FACE TRANSPLANTS: STILL RESEARCH, OR REGULAR CARE?
Is replacing a severely disfigured person's face with one from a dead donor ready to be called regular care, something insurers should cover? Mayo Clinic has raised that question by doing the first U.S. face transplant that's not part of research.
Faces, hands, wombs and even a penis have been transplanted in recent years. Unlike liver or heart transplants, these novel procedures are not life-saving but life-enhancing.
Who pays for care that can cost $700,000 or more is a growing concern. Ethics and liability issues also may arise when they're done without the oversight of an institutional review board, a hospital panel that ensures research participants' rights are protected.
The group that runs the nation's organ transplant system, the United Network for Organ Sharing, plans a conference to help guide policy.
'It's time to come together and really ask the question, 'Is this going to become a standard of care?'' said Dr. Scott Levin, a University of Pennsylvania surgeon who heads the UNOS panel on this.
He has done several hand transplants and no longer considers them experimental, though insurers won't pay. Worldwide, about 100 hand, face or other, newer body-part transplants have been done, and 'that's not a lot of cases' to judge safety and effectiveness for some types, he said.
Andy Sandness' operation last June was Mayo's first face transplant. Worldwide, roughly two dozen have been done, about half of them in the U.S. Four recipients have died.
At Mayo, 'we wanted to do it as a clinical program' and felt there was no research question to be answered because the operation uses standard surgical techniques, said the plastic surgeon who led it, Dr. Samir Mardini. Without a transplant, Sandness would have needed 15 other reconstructive procedures and the cost would be 30 to 40 percent higher, Mardini said.
Hospital management and multiple committees reviewed the case, including an ethics panel, a social worker and transplant psychiatrist, to ensure Sandness knew the risks and was giving informed consent.
'It's critically important that he understand what he would be putting himself through,' Mardini said.
Sandness' insurance company would not agree in advance to pay; so, a fund from a donor to start a hand and face transplant center at Mayo paid. Talks on paying for after-care are ongoing.
The long-term medical and psychological effects will be studied as part of formal research, even though the operation itself was not, Mardini said.
'I don't particularly agree with the argument that it's not research,' said bioethicist Arthur Caplan, who advised New York University on its first face transplant, in 2015.
There's a higher bar to ensuring informed consent for research versus a new therapy, and 'questions about competence, experience and even liability are different' when something is called regular care, Caplan said. 'In my view it's still highly experimental.'
Dr Mardini and his team were in limbo following that first call; he was scheduled to fly out of Minneapolis with his family and actually checked in at the airport before being notified that Lilly had given permission for the face transplant after her husband proved a perfect match. He turned straight around and raced back to the Mayo Clinic to begin prepping for the complicated surgery.
Rudy was scheduled to arrive at Mayo on Friday, the following day; there was much to be done in the meantime. The Mayo team were sent extensive CT scans of his head and neck which were studied carefully and passed to a medical modelling company, 3D Systems Medical Modelling, which worked overnight to create guides to be used during the surgery. Four engineers would fly with those guides to Minnesota on the day of the operation.
Rudy was airlifted to Mayo on Friday and was taken into intensive care; during this time, a team of anaplastologists made a moulage – or mask – of his face to perfectly recreate it.
'They're actually working in a separate area recreating a face for the donor, so that when we've removed the donor's face, we can actually restore it to almost an identical appearance,' Dr Mardini says.
'What they did for this is that they did a life mask, not a death mask; they put the same effort and energy and material into someone who was going to live with this prosthesis.
Rebecca Ousley of LifeSource says: 'We reconstruct every single donor, every time, regardless of what the family's funeral plans are. We had worked with a company to create an amazingly beautiful face mask, it's called a life mask, that was reconstructed onto Rudy. It was beautifully done.'
He was brought into an operating room around 11pm as the anaplostologists continued their work; it took them 14 hours to construct a lifelike mask. Meanwhile, the multidisciplinary team held a briefing and then began surgery on Rudy's face.
'You're cutting from the front of the ear below the neck and lifting the skin from the back to the front, because eventually you're going to take the face off from the front,' Dr Mardini says. 'So everything has to be dissected from the back to the front. So you do the skin first, then you do the nerves.
'One of the most important parts of the surgery is identifying the facial nerves on both sides and stimulating them to see what each nerve does, both on the donor and the recipient,' Dr Mardini says. 'This way, when you transfer the donor's face to the recipient's face, you can match the nerves that do the exact functions that are similar to each other.'
He says: 'We mapped out all the facial nerve branches on both sides, we took pictures of the nerves, we printed (off the maps onto paper), and then we started writing down on each nerve what it does – for example, one nerve on the donor was 20 per cent eyelid contraction, 80 per cent smile. The next one was mouth closure … we had seven branches on each side matching to seven branches on Andy's face.'
He explains: 'On Andy, we also had to make sure we left the nerves that do forehead movement and eyelid closure since we would be leaving those structures alone and we wanted them to continue to function normally.'
The team also videotaped the stimulation of the nerves on both Andy's and Rudy's faces, then took the videos to a back room to review them carefully to make sure they matched the appropriate nerves to each other.
'A lot of the success of this is not in just being able to complete a face transplant but be able to make it look normal and function normally,' he says.
After the nerve mapping, the team turned to blood vessels, dissecting them out, then turned to the bones to expose them. Part of Rudy's bone structure would have to be removed and transplanted to Andy, whose injury had left him without parts of his jaw, cheek bones and other vital facial structures.
'What we do next is expose the bones, place the cutting guides so that the cuts in the bones are made accurately,' Dr Mardini says.
That's where the modelling guides come in: 'You clip them onto the bone; they fit perfectly. They clip on in a way that you know exactly that that's the right place for them, because they're based on CT scans of the donor and the CT scans of the recipient.
He says: 'There are slots in those guides that allow a saw to get in exactly right, it's at the right angle, the right location of the cut. If you end up making those cuts exactly as planned with those guides, both on donor and recipient, if you take the donor face off and put it in the defect set up in the recipient, they match perfectly to each other.'
Andy was brought down to the operating room while Rudy was being prepped for surgery; the men were just a few feet away from each other in separate operating rooms. The team worked on Rudy for about three hours while Andy was getting a tracheostomy and a stomach tube because Andy would not be able to eat through his mouth for about a month to allow the incisions in the mouth to heal after the surgery and to avoid any airway issues. Three hours later, Andy was ready for the transplant work to begin.
A multidisciplinary team of 60 medical professionals worked for 56 hours to transplant vessels, nerves, skin, bone and other tissue from Rudy to Andy, ensuring that they took proper breaks during the marathon surgery
Dr Mardini inspects Andy's face in the days following the transplant; doctors had fitted him with a tracheostomy and stomach tube because he would not be able to eat through his mouth for several weeks to allow incisions to heal
'You're creating a devastating deformity,' Dr Mardini says. 'In order to achieve optimal outcomes, you have to replace many parts that are not normal.'
He explains: 'You're taking out some tissue that is normal; if you didn't, you wouldn't get an optimal result – but then if the transplant failed, you're in a severely horrible situation.'
To put it simply, the team had to deconstruct even more of Andy's face to allow for a more complete transplantation of Rudy's – creating something of a blank canvas to work with, to begin reconstruction from 'square zero', Dr Mardini says.
When the team finished work on Rudy's face, they brought the donated face to Andy and transplanted it, connecting the bones to each other using plates and screws.
The team had to replace Andy's hard palate, his upper and lower jaw bones, cheek bones and part of the bottom of his eye socket.
'All of the inside of the mouth, the teeth, the cheeks, the floor of the mouth, and every tissue in front of the tongue… all that tissue came from Rudy,' Dr Mardini says.
Another important aspect of the surgery was connecting the blood vessels on Rudy's face to the blood vessels on Andy's face. The team used a microscope and microsutures for this part to make sure it was done perfectly. These vessels bring blood flow to the tissues.
Rudy was not allowed to look at himself as his face began to heal; here, he looks in a mirror for the first time, three weeks after the surgery, when he told doctors that the results 'far exceeded' his expectations
Neither Andy nor his doctors could have hoped for the face transplant - a first to be completed at the renowned Mayo Clinic - to have gone any better
It was during this crucial part of the transplant that the team experienced the most harrowing moment of the surgery.
'We connected the vessels on one side, it worked well; connected the vessels on the other side, it worked well,' he says.
'One of the most special moments is when you connect the arteries together, you see one side of the face pink up and then the other side pinks up, as well.'
Once everything seemed to be working smoothly, he left the room to take a break; it's imperative during such a marathon surgery – about 32 hours by this point, he says, to ensure that team members are allowed appropriate rest times – even though, in his case, adrenaline made it hard to relax during such an important and rare procedure.
'Half an hour later, they called me, because the face had gone completely white,' he says. 'When I came back into the room, it wasn't just a normal white – it was, to me, like a death white. It was so white the lips were mottled purple.'
Such circumstances are often the result of a clot preventing blood from getting to the face, he says.
'I looked at the artery, there was no clot; I opened the artery anyway just to make sure,' he says. 'I didn't see a clot. I looked further, deeper, didn't see a clot.
'We warmed the room, we warmed the face, we did all the steps that we do to kind of troubleshoot a situation like this. We injected antithrombotic agents that dissolve clots even though we didn't see a clot, thinking it might be in smaller blood vessels within the face.
'Rudy's face was already connected; you've already taken off all the tissue that Andy had before, so you're not in a good situation if this doesn't work. Finally I started following the blood vessels into the face and a couple of inches further in we found a part of the blood vessel that completely closed up but not clotted. From the outside, the muscles of the vessel wall had squeezed it so tight that no blood was going past that area. We call this a spasm of the blood vessel. We spent a few minutes stripping the outer layers of the blood vessel to release the tightness.
'Once we stripped that off, the face turned completely pink, meaning blood reached all the tissues of the face and it was healthy again.'
Dr Mardini looks on as Andy's face is shaved in the days after the surgery; the patient's donor, Rudy, could not grow hair on a small patch of his chin and Andy, too, has no hair in that exact location
Andy, overcome with emotion from his new face, hugs a member of the transplant medical team; Dr Mardini says that, despite more than two days of surgery, the doctors and nurses remained energized and were proud to be a part of the procedure
As all of these procedures were going on, other teams were hard at work, specialists working simultaneously to use their expertise to ensure Andy got the best care. Dr Mardini particularly acknowledges Dr Hatem Amer and Dr Raymund Razonable, who managed the immunosuppression medication and the antibiotics throughout the transplant, and the anaesthesiologists, who had to closely monitor both patients throughout the surgery. Rudy's other organ transplants took place after the facial surgery, so the anaesthesiologists had to ensure his lungs weren't overloaded and fluid levels remained stable. He donated five other organs and tissue in addition to his face.
Every member of the team was enthusiastic and engaged despite the marathon surgery; Rudy's face took 24 hours to remove while Andy's surgery lasted a total of 56 hours. Nurses were attending to the tiniest of details.
'We have to prevent pressure sores from developing on Andy's body from just sitting still,' he says. 'The nurses were going under the bed, massaging the back, massaging the butt, massaging the legs every three to four hours.'
He marvels at the atmosphere in the room and the stamina of the 60-strong team involved.
'You would think that as the weekend was going on, team members would start to get exhausted and frustrated and disengaged,' he says. 'They were actually getting extremely energized and enthusiastic and honored and privileged to be part of such a historic procedure done in Mayo.'
In the forefront of everyone's mind, as well as the exceptionality of the surgery, was the incredible, life-changing generosity of Rudy and his family.
Noting how many lives Rudy touched because of his decision to be an organ donor and Lilly's decision to approve the face transplant, Ms Ousley says: 'Death doesn't have to be the end of the story. It's simply a new chapter in that person's history; they get to live on.'
That rings true for Lilly, who was thinking when she made the decision not only of a legacy for her son Leonard but also the lives Rudy could touch.
Lilly says she thought: 'He's a donor, and this is my call – we're going to do it.' Because if we could help countless people, why not? That's pretty much why I did it.
'I've been in contact with the liver recipient, I'm friends with the heart recipient on Facebook. There's one guy who got a kidney and a pancreas, we haven't heard anything from him yet; another lady got a kidney, I believe, and then we've not been in contact with the lung recipient. But I sent everybody letters around the same time, they all got pictures.'
She says: 'I knew what needed to be done and I just did what needed to be done' – adding that the process takes several days, as recipients are identified, and it's not an immediate process as often portrayed on medical television drama.
'The process is a long process, but it's worth it,' she says.
And at the forefront of her mind, now, is her son Leonard, who is a perfect physical mix between Rudy and herself – complete with the chubby cheeks that they both sported as babies.
'I just wanted to show him, later, down the road, all the people his dad saved,' she says.
Andy had hoped for a face that could blend into the crowd and would not frighten children; more than six months later, he never expected the results to be as phenomenal as they were following the surgery
Andy - who lives in Wyoming - has been in contact with Lilly and shares her husband's love of outdoor pursuits; he says that, through him, Rudy will 'continue to love hunting, fishing and dogs'
She's been in touch with Andy, who she learned more about following the surgery.
She says: 'After seeing the before and after pictures, the only thing that resembles him is my husband could not grow hair right here' – pointing to a spot on her chin – 'and neither could Andy.'
Andy, 500 miles away in Wyoming, is committed to honoring his donor's legacy; he has been in contact with Lilly and shares favorite pastimes with Rudy.
'He's still going to continue to love hunting, fishing and dogs – through me,' he says.
For information on how to become an organ donor, click here
A GoFundMe page has been set up for Lilly and Leonard by her cousin to help cover medical and childcare expenses