In January of 2008, Westfield resident Susanne Mullman received a call that would change her life forever. Her daughter Jen's college roommates had phoned to tell her they had just taken Jen to the hospital because she vomiting blood.
Driving to Maryland in the middle of the night, Susanne said she couldn't imagine that her daughter could be terribly sick because she had just been home the week before. But within one hour of arriving at the hospital, a doctor informed her that they were readying Jen for transport to another hospital because they believed she would need a liver transplant due to autoimmune hepatitis.
"There is nothing more shocking than finding your child in the ICU," Susanne said. "The only thing I knew about a transplant is you have to wait a long time and you get really sick."
Because Jen's younger brothers were at home in Westfield, Susanne said she began asking friends and family if they knew of other options for her daughter closer to home.
"After some research and help from friends, we were flown to NewYork-Presbyterian Hospital/Columbia," Susanne writes in her article 'Reflections of a Living Liver Donor.'
Once there, Susanne met Dr. Robert Brown a hepatologist, who is the director of the Center for Liver Disease and Transplantation at NewYork-Presbyterian/Columbia Hospital and NewYork-Presbyterian/Weill-Cornell Medical Center.
"When Dr. Brown said she might be a candidate for a living donation and I said, 'What's that?' and he explained it, I thought, 'Thank God.' Any parent would want to be told there's a way to help their child rather than sitting back and hoping someone else does," Susanne said.
According to NewYork-Presbyterian Hospital, in 2010, over 18,000 individuals in the United States were waiting for liver transplantation. But just over 6,000 livers from deceased donors become available each year.
Living donor liver transplantation is an approach that enables more patients to benefit from transplantation – and earlier in the course of their illnesses, leading to better outcomes.
Prior to her own experience, Susanne said she was completely unfamiliar with the concept of living donation but after finding out that she was a match for her daughter, she was incredibly relieved.
Dr. Benjamin Samstein, Surgical Director, Living Donor Liver Transplant Program at New York-Presbyterian Hospital/Columbia University Medical Center, served as one of the Mullmans' doctors. Samstein said when parents are faced with their child needing a liver transplant and told that the risk of the child dying is 10 to 15 percent within the next year, that fear is far worse than dealing with the trauma and fear of sickness related to being a donor.
"Because of the scarcity of donor organs, living donors are an important part of the care we provide," said Samstein. "A living donor offers the possibility of earlier transplantation to those in need."
"In my opinion, living donation is easier on the family than waiting for a donor organ," Susanne notes. "I know that sounds counterintuitive, but it is true. You have time to make a plan, which gives you some control. You set a date that is optimal for the patient and all family members. You have time to organize two care teams for the recipient and the donor. When I remember the chaos that ensued during Jen’s first hospitalization, and the smooth, organized weeks we had after the transplant surgery, the value of having time to prepare cannot be overstated. Knowing that family and friends were caring for Jen and her siblings made it easier for me to focus on healing after the surgery."
Samstein said most young people who undergo a liver transplant "do well and live for decades." He added that it is hard to say if their life spans will equal those of their non-transplant peers because the procedure only began in earnest in the late 1980s.
"We expect that many will work, run marathons, get married and have children," said Samstein.
Jen and Susanne, who were 21 and 48, respectively, at the time of the surgery, said their faith in their medical team helped them both approach the procedure with confidence.
"In the back of my head, I was worried that I was putting my mom in harm's way, but I trusted that the surgeons would take care of her," said Jen, who noted that the entire experience has brought her and her mom closer. "Coming to after the surgery, I was happy and relieved when my aunt told me that my mom was okay."
Susanne said she agrees with a fellow living donor who said that the hardest part of the process is "getting on the table."
"When I woke up the next day, I said, 'Thank you, it's over!' The hard part was over, now I could begin the recovery. The pain was very well-managed and there were no complications; I was a little tired," said Susanne, who expressed her gratitude for the tremendous outpouring of support from the Westfield community.
"We had a cooler on our steps and people would bring meals," she said. "In times like these, people are extraordinary. You just realize people are tremendously kind and we are blessed."
Susanne was able to donate the left lobe of her liver, 40 percent, to her daughter because she and Jen are a similar size. Had Jen been larger, more of Susanne's liver would have been required, Susanne noted.
"The liver regrows," she explained. "We both have fully-sized livers now, and it grows in just one lobe; both of ours looks more like a football. I had an MRI about a year after. Another extraordinary thing is that the body shuts it off somewhere between 91 and 96 percent so it never overgrows."
For the Mullmans, to say that this experience was life-changing would be an understatement. Susanne has used her unique understanding of living donation as an opportunity to bring comfort and empowerment to those going through the same ordeal. She currently volunteers three days a week on the transplant floor of NewYork-Presbyterian. Jen not only makes the time to give back, but her procedure has set her on a new career path.
"I volunteer at Morgan Stanley Children's Hospital every Sunday," she said. "Since I've been hospitalized, I understand how lonely being in the hospital can be. I've always enjoyed spending time with children, so I thought it would be nice to spend time with hospitalized children. I began volunteering at the Child Life Program and it's been such a rewarding experience. The children I meet at the hospital are amazingly resilient and optimistic and I love spending time with them. So, I'm now starting graduate school in the fall to get a degree as a Child Life Specialist."
Rather than thinking of it as a difficult time in their lives, Susanne has chosen to view her situation as an extraordinary opportunity.
"In the end, the memory of the pain fades and the scars just become who you are, but you have the opportunity to help a loved one," she said. "All of us get that chance to help someone else just by checking that box on our driver's license."
