Jodi DeMuth has brought life to the Seacoast, delivering hundreds of babies as a midwife, but in this new Year she is waiting to see whether a family member can save her life by donating 60 percent of their liver.

DeMuth, 58, is in need of a transplant because of degenerative autoimmune disease primary biliary cirrhosis (PBC), which has irreversibly scarred her liver. The Wells resident was diagnosed with the disease 23 years ago and, with the help of her doctors and medications, she managed to keep its progression at bay until her condition recently reached a new level.

Doctors have determined that a live donor is DeMuth’s best option, so she’s turned to eight of her family members, all of whom are being tested to determine whether they are a match. with the same blood type, and all in relatively good health, it’s likely that DeMuth will find a match in one of those eight family members.

Her biggest obstacle is money. The surgery can cost up to $1 million dollars and will take DeMuth and her donor away from their jobs for months.

Now, this woman who has given so much of herself to parents and their newborn babies as a midwife is turning to the community for help.

An autoimmune disease, PBC is chronic, progressive and has no cure. While the liver is regenerative and can keep itself healthy under attack for long periods of time, it eventually suffers too much damage.

“It’s a condition that progresses over many years and generally ends up in typical cirrhosis of the liver. This causes a variety of symptoms, generally causes fatigue and general debilitation,” said Dr. James Markmann, chief of transplant surgery at Massachusetts General Hospital and a professor of surgery at Harvard University. “It eventually becomes life-threatening.”

After her PBC diagnosis, DeMuth and her doctors created a successful treatment plan that has kept her feeling healthy and living well. but the disease’s recent progression cannot be treated with medication. The daily struggles are worsening as DeMuth faces intense fatigue, abdominal inflammation and severe itchiness, all diminishing her quality of life.

“At periods of time when I’m feeling more kind of enlightened, I feel really lucky that I’ve had 20 years of this being pretty low-key, pretty back-burner,” DeMuth said. “I’ve been able to raise a family and have this amazing career.”

The closeness of DeMuth’s family is humbling, the love you feel between them striking and the laughter they emanate contagious. It was all felt during a brief lunch with DeMuth and six of her family members as they started the liver-match process recently at Massachusetts General Hospital, where the transplant surgery will take place.

“We thrive a little on humor and in general our tone is optimistic and positive. we all grew up with the sense that everything would be OK and that our strength lay in our connectedness. It’s just always been a piece of the fabric of the whole thing,” Jodi DeMuth said. “We make fun of this all the time. This whole process that we’re going through. There’s nothing else to do.”

For the eight family members undergoing testing — including Jodi’s sister Nancy DeMuth and two other siblings, daughter Caitlin DeMuth Greenwood, 24, and son Mischa DeMuth Winters, 33 — there was never a question of whether to donate.

“No, I didn’t think about it. It’s a yes. Automatically, if I’m the best one, then it’s a yes,” said Nancy DeMuth, who lives in Marblehead, Mass.

The two sisters have a strong bond formed from their childhood memories, time spent together in California in their younger years, and Jodi’s involvement as a midwife in the birth of Nancy’s daughter.

Jodi DeMuth’s longtime partner, Earl Whitfield, who was the first to be rejected as a potential donor, is a strong source of support, particularly for DeMuth and her children.

Caitlin DeMuth Greenwood was just 2 years old when her mom was diagnosed with PBC. It’s not something that’s been a focus in her life, until now.

“It was definitely hard when it hit another stage. I really love her and everybody does. It’s just not supposed to happen like this. I worry about it, but I don’t,” she said, turning to her mother, their eyes locking. “She likes to make sure I don’t.”

As a nurse midwife for more than 20 years, DeMuth has treasured her intimate access into people’s lives and witnessing the strength of women every day. for the first time, DeMuth will take a leave of absence — effective Jan. 3. It’s a demanding job — physically, mentally and emotionally — that has only become more so for DeMuth as her disease has progressed.

“There’s this ongoing fear of, if I’m not a midwife, who will I be,” said DeMuth, who started her career in 1999 in Portsmouth and is now at York Hospital OBGYN and Midwifery Associates. “It’s been such a huge part of my life for so long.”

There is an immeasurable reward from her work, which has kept DeMuth going, even on the days where the effects of the disease are hitting hard.

“No matter how tired I am and no matter how drained I might feel, to be able to be involved in people’s lives the way that we are as midwives allowed access into people’s lives, is too amazing of a gift to ever be overshadowed by anything else,” she said. “Even when I’m falling on my feet ready to go home and go to bed.”

DeMuth estimates she’s delivered between 700 and 800 babies on the Seacoast.

“Pretty much anywhere we go, we bump into somebody who comes over and starts talking,” Whitfield said.

Two of those babies are Christine Allen’s children Saige, 9, and Seth, who was born in October. DeMuth delivered Saige in Portsmouth, N.H., and Allen followed her to York for the birth of her second child.

With the bond they’ve created over the years, Allen said DeMuth is more a friend than a midwife.

“She’s awesome,” Allen said. “She’s there for all the support. The advice. She’s amazing.”

Hope for a match

The self-titled “Gang of 8″ undergoing testing are hoping they will be a match for DeMuth. The testing is rigorous and seeks to determine who is the best match on every level, including physical and emotional. The procedure takes about 60 percent of the liver from the donor, who usually goes home in five to six days and heals for about six weeks, Dr. Markmann said.

The recipient’s recovery is dependant upon how sick they are going into the surgery, Markmann said. They are usually in the hospital for six to 10 days and are closely monitored for the first few months for rejection of the transplant, when the potential for rejection is highest.

Donors are expected to return to a normal life, without any changes in their lifestyle or quality of life, Markmann said, while recipients will take immunosuppression medication for the rest of their lives.

“One of my biggest fears is just this ongoing unknown of what will happen, how things will go. How will I be? How my donor will be?” DeMuth said.

For DeMuth’s family, their prominent fear is a difficult one to face.

“That Jodi won’t live. That’s my greatest fear,” Nancy DeMuth said.

Markmann said patients in their 60s undergo transplants all the time and “they do great.”

“A lot of it depends on how sick they are and how debilitated they are going in,” he said. “She should experience a full recovery, and I would say at that age not have any out-of-the-ordinary expectations for complications.”

A liver transplant is a major surgery that keeps the donor and recipient out of work for several months. Including surgical expenses and ongoing costs, it is estimated the transplant surgery for DeMuth and her donor could range up to $1 million, DeMuth said. Health insurance, which will cover a portion of the bills, will only pay for a blood relative to be a donor, she said.

“I think that trying to always figure out in my head how we’re going to do it and how it’s going to work out just adds to the anxiety right now,” DeMuth said. “I feel guilty. It feels incredibly awkward to me. It’s hard for me to look around me, and to the world around me in particular, and feel that there’s any way that I deserve either help or assistance or anything. That’s a struggle.”

Mischa DeMuth Winters, who is serving in the U.S. Coast Guard and lives in California, said his primary concerns aren’t about the details of the surgery or its costs.

“My main concerns are more for my mom and her loss of work, her recovery time after the operation, the fatigue level she’s been having for the last year-plus,” he said. “My concerns are more for her.”

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