LEWISTON — At first, Libby St. Pierre said no.

Her baby daughter, Emmy-Leigh Cole, was not going to be an organ donor. She was alive. Badly injured, yes, the whites of her eyes clouded red from extreme brain trauma, but St. Pierre had hope. Despite the machine that helped her breathe and the IV that kept her hydrated, Emmy-Leigh’s baby-soft belly was warm to her mother’s touch.

She was alive.  

But nestled in a Maine Medical Center bed surrounded by equipment, Emmy-Leigh couldn’t cry, laugh, see or hear. Tests showed she had no response to stimuli, even pain. She’d been severely abused by her mother’s boyfriend for the 40 minutes he was babysitting her. Her body was alive with the aid of life support, but she was brain-dead. 

“At one point I said, ‘I’ll just take her home like this as a vegetable. I don’t care. I just want her to come home,'” St. Pierre said. “But they said she had absolutely nothing. She had nothing.”

Emmy-Leigh was 8 months old.

When St. Pierre was approached about organ donation, her immediate response was no. No, because she still had hope. No, because someone used the word “harvest” in connection to Emmy-Leigh’s organs and that upset her. No, because although she’d noted on her driver’s license her own willingness to be an organ donor, she really didn’t know what donation entailed. No, because she couldn’t bear the thought of her once bright, cheerful little girl being “cut up.”

But another child’s life was at stake.  At that moment in New England someone else’s baby girl was dying and doctors said Emmy-Leigh could make her better.  St. Pierre considered her decision, prayed about it. She realized she didn’t want another family grieving for their baby girl. She wanted Emmy-Leigh, in some way, to live on.

She said yes.

The decision

That was three years ago. At the time, 95,000 people were waiting for transplants in the United States.

In New England that year, 292 people died while on the waiting list and another 83 were removed because they were too sick to go through with the procedure. Emmy-Leigh was one of 257 people in New England who donated their organs after death. She was one of six babies.

Right now, just over 107,000 people are waiting for transplants in the U.S., more than 4,400 in New England and 126 in Maine.

In Maine, only Maine Medical Center in Portland is licensed to do transplant operations, and then only for kidneys and pancreases. Typically, all other organ recipients go to Boston. 

Donors, however, can come from any hospital in the state, though most are patients at Maine Medical Center, Central Maine Medical Center in Lewiston and Eastern Maine Medical Center in Bangor, the state’s big trauma centers. To become an organ donor, a patient must be brain-dead while other organs remain undamaged and healthy. That usually means a motor vehicle accident, major stroke or other severe trauma. Or, for a baby, being abused. 

St. Pierre had planned to be an organ donor herself. As a medical assistant, she was well aware of the number of people who needed a transplant. But the question of her baby girl becoming a donor never crossed her mind.

Emmy-Leigh was a surprise baby, born eight years after St. Pierre’s second daughter. She was tiny at birth — 4 pounds, 14 ounces — but full-term and healthy. And so adorable that even strangers cooed over her. 

“Everybody would stop me wherever I went,” St. Pierre said. “There was no quick trip to the grocery store with her.”

A single mom, St. Pierre hadn’t expected to get pregnant after her first two daughters, so she and the rest of her family relished Emmy-Leigh’s babyhood. She was fawned over, played with, cuddled. At 8 months old she hadn’t begun to crawl yet. St. Pierre said it was because she was never on the floor long enough — she was always in somebody’s arms.   

On March 22, 2007, St. Pierre and her three daughters went to a cheerleading practice. The cheerleaders adored Emmy-Leigh and she adored them, often sporting her own mini uniform and squealing and giggling with delight during practices. But that evening she was tired and starting to get fussy. When St. Pierre’s new boyfriend, Todd Gamache, dropped off her forgotten sneakers, she asked him to take Emmy-Leigh home.

St. Pierre returned home about 40 minutes later. While she unpacked the car, she said, her two oldest girls went inside. One of them ran right back out to get her. Something was wrong with the baby.

Inside, St. Pierre said, Gamache told her he couldn’t get Emmy-Leigh to wake up. St. Pierre found the baby wasn’t breathing. She shouted for someone to call 911 and she started CPR. 

In the ambulance Emmy-Leigh’s heart stopped. Paramedics got it started again. Doctors at CMMC told St. Pierre her baby had a severe head injury and she had to be sent by LifeFlight to Maine Medical Center. Just before Emmy-Leigh was airlifted away, St. Pierre gave her a kiss goodbye. 

No one but Gamache knows what happened to Emmy-Leigh during those 40 minutes he was alone with her. In the months that followed he would change his story several times, ultimately telling a judge that he accidentally dropped her after giving her a bath.  But doctors said her injuries didn’t fit with Gamache’s claims. A medical examiner would find she died of a blunt impact head injury. Deputy Attorney General William Stokes said there were at least three impact sites on her head and multiple injuries to her body. 

Gamache pleaded guilty to manslaughter in April 2008. He was sentenced to 18 years in prison, with four years suspended.

But that night in a Portland hospital, St. Pierre was focused only on her baby. Doctors put her on a ventilator to help her breathe and gave her intravenous medication to stop her seizures and brain swelling. St. Pierre could see only one small bruise on her head. To her, Emmy-Leigh looked peaceful, like she was sleeping. St. Pierre lay down in the hospital bed and held her.

At some point, someone — a doctor or nurse, the specifics are hazy for St. Pierre — said Emmy-Leigh might not make it. St. Pierre was asked what her plans were for the baby. Someone brought up organ donation.

“So I did start thinking about it,” St. Pierre said. However, she didn’t make a decision. “I didn’t want to believe that there wasn’t any hope for her.”

But hours later, tests showed that Emmy-Leigh was not going to recover. Doctors said she was brain-dead.

Other people — St. Pierre believes they were from the New England Organ Bank — brought up organ donation again. But they used the word “harvest” in connection to Emmy-Leigh’s organs. Repeatedly.  

“I couldn’t picture her being cut up and being harvested. They kept using that word a lot and that word really bothered me,” St. Pierre said.

So she said no.

A careful request

“Harvest” is a word the transplant program manager at Maine Medical Center said should never be used, especially in talking to a grieving family member. He said his transplant program staff members use the term “organ recovery” or “organ donation,” and for good reason.

“We’re not going to harvest any organs; we’re going to recover them for transplantation purposes,” said Bruce White. “It’s unfortunate, but I will tell you that’s old-school language. Unfortunately, it’s used by some hospital staff. But we agree with that mother 100 percent. It is insensitive to use that term.”

The nurses caring for Emmy-Leigh began talking to St. Pierre about donation. They asked her what she thought of it, encouraged her to think about it. The word “harvest” disappeared, but St. Pierre still wasn’t sure if organ donation was right for her baby.

“I kept putting them off,” she said. “At first I was kind of troubled by it. I didn’t know what that entailed. Like, if I would have to have a closed casket with her. That’s something I wanted to have, an open casket.”

Finally, she said, she sat down with representatives from the New England Organ Bank, the organization designated by the federal government to recover organs and tissues for transplant throughout most of New England. They answered her questions, explained the procedure. Everything would be done, St. Pierre was convinced, “in a tasteful way.”   

She wanted her daughter to live. She thought organ donation might be a way for her to live on.

But family members weren’t so convinced that organ donation was the best thing. St. Pierre said her parents objected based on personal and religious beliefs. They thought Emmy-Leigh’s body should remain whole.

Their objections couldn’t prevent the donation, but someone else’s could. Emmy-Leigh’s biological father, in jail on assault charges, also objected, St. Pierre said.

St. Pierre was devastated and angry. Having finally made the heart-wrenching decision to donate her daughter’s organs, she couldn’t believe someone else could stop it. But later that day the transplant representatives returned. Like St. Pierre, Emmy-Leigh’s father had changed his mind.  

They could go forward with the transplant.

That Saturday, just two days after she came home to find her daughter unconscious and not breathing, transplant representatives told St. Pierre they would take Emmy-Leigh at 10 a.m. Somewhere in New England a 10-month old baby girl was dying. St. Pierre said she was told the baby had a disease that prevented her from processing food and she needed a liver, pancreas and small and large intestines. Without Emmy-Leigh’s organs, she had no hope.

“So I called all my close friends and family who wanted to come say good-bye to her to hurry up and come up,” St. Pierre said.

Transplant representatives ended up arriving at 9 a.m. rather than 10 a.m.

The other child was so sick she couldn’t wait another hour. 

Afterward

Days later, St. Pierre and her family held Emmy-Leigh’s funeral. In an open casket, Emmy-Leigh wore a pink princess dress. A matching cone-shaped princess hat covered the scars of her autopsy.

St. Pierre looked for the incisions she knew had to be made for organ donation. She didn’t see anything. 

“They covered her well,” she said.

Emmy-Leigh was cremated and buried in a local cemetery. St. Pierre keeps a portion of her ashes at home, currently in a small container covered by a pink baby hat until she finds something more permanent.

Both recipient and donor remain anonymous unless both sides decide they want their names known. Until then they can send letters to each other, offer updates and communicate anonymously through the New England Organ Bank.  Representatives encouraged St. Pierre to wait a little while before checking on the progress of the baby who received her daughter’s organs. She was already grieving a loss and the other baby’s survival was in no way a sure thing.

St. Pierre called the organ bank for an update within a couple of weeks.

“I had nothing to do after she passed away. I didn’t go to work; I didn’t do anything. And I was curious. I wanted to know who this baby was,” she said.

The girl was alive but not completely out of danger. Emmy-Leigh’s organs seemed to be functioning well.

Over the next three years, St. Pierre and her mother called regularly for updates. Each time the news got better. A few months ago they learned the girl — now almost 4 — is doing so well that she’s off all feeding tubes and is eating on her own.

St. Pierre recently asked the organ bank if she could meet the child and her family. It could take weeks or months for any meeting to happen. Or, if the other family declines, it might never happen. But St. Pierre is hopeful. With the little girl healthier now, the timing feels right.

“That’s why I kind of want to meet her, to make sure everything is working good, for myself,” she said. “I don’t tend to believe what people tell me; I have to see it for myself.”

St. Pierre imagines the little girl to be petite and blond. It’s similar to how she imagines Emmy-Leigh would be at age 4.  She’s pleased the other girl is doing well, that Emmy-Leigh’s organs are the reason for that. She wouldn’t want another family going through what she’s gone through.

“I’m happy (for them). Um, and a little jealous,” St. Pierre said. “Actually, a lot jealous.”

St. Pierre continues to grieve. Baby photos are scattered throughout her Lewiston apartment: Emmy-Leigh smiling at the camera, Emmy-Leigh in her mini-cheerleader uniform, Emmy-Leigh as a newborn, her tiny pre-birth ultrasound picture tucked inside the same frame. In a small keepsake box, St Pierre has safeguarded Emmy-Leigh’s pacifier, a thin lock of her hair, one of the pink ribbons mourners wore to her funeral. St. Pierre has given away a few of her baby clothes to very close friends or family members, but she’s kept most, turning her favorite Emmy outfit — a pink Baby Gap number— into a teddy bear that she brings with her to memorials or any other events that have to do with Emmy-Leigh.

But St. Pierre doesn’t regret her decision. If she had to make the choice again, she said she’d choose organ donation. At a recent conference for organ recipients and the families of donors, she heard firsthand how transplants have changed recipients’ lives. 

“It made me feel good that these people don’t just take it for granted. They really, really, really appreciated it,” she said. “I know it’s a hard decision, but I would definitely recommend it for somebody who’s going through this.”

At that conference, organizers also honored donors with a slide show. Most were photos of adults. Only two were very young children.

For a moment Emmy-Leigh’s smiling face appeared onscreen.  

“When Emmy’s picture came up, everybody went, ‘Awww,'” St. Pierre said.

ltice@sunjournal.com

Nearly half of Maine drivers —  almost 500,000 people — have little heart decals on their licenses, a notice to the world that they want to become organ donors. Thousands more have noted it on their state IDs or have registered their desire directly with the New England Organ Bank.

But while noting a willingness to become an organ donor is easy, actually becoming one is harder. Last year, organs from only 37 people in Maine were donated after they died.

To become an organ donor, a person must be brain-dead while other organs remain undamaged and healthy. That usually means dying from a motor vehicle accident, major stroke or other severe trauma. Less than 3 percent of deaths allow people to be organ donors, according to the New England Organ Bank. 

Even in those cases, not everyone becomes a donor. Potential donors can’t have major health problems that would affect their organs or the recipient after transplant. Their blood type and organ size must match a potential recipient. And, in the wake of their death, family members must allow donation.

So many hurdles stand between a potential donor and a donation that the federal Department of Health and Human Services every year honors hospitals that have met donation goals, such as improved donation rates and the recovery of 3.75 organs or more per individual donor.

Maine’s three big trauma centers — Central Maine Medical Center in Lewiston, Maine Medical Center in Portland and Eastern Maine Medical Center in Bangor — have routinely been honored by DHHS for their work. Last fall, Maine Medical Center and EMMC were two of more than 200 American hospitals to receive the Silver Medal of Honor for their work. CMMC was one of 30 hospitals — and the only one in Maine — to receive the Gold Medal of Honor.

In the previous 22 months, nine CMMC patients had died in a way that made them possible organ donors. Seven actually became donors.

Larry Hopperstead, CMMC’s chief medical officer and a former trauma surgeon, credits his hospital’s high donation rate to several things: a dedicated medical staff, the high level of medical care provided to donors between injury and donation, and the care taken in dealing with grieving family members who are not always convinced that organ donation is best for their loved ones. He said the hospital has spent years working on it because CMMC feels donation is important.

“To the recipient, it’s absolutely a gift of life,” he said. “And to the donor’s family, it’s often a gift of solace, I think, that what seems meaningless isn’t totally meaningless.”

As a state, Maine has also worked to increase donation. Several years ago, it passed a law giving priority to a donor’s wishes rather than the wishes of a family member who objects to donation. As of Jan. 1, donors can note their wishes on their driver’s licenses at any time rather than having to wait until the license is up for renewal.

ltice@sunjournal.com

Want to become an organ donor? Register at www.donatelifenewengland.org or at your local Maine Bureau of Motor Vehicles branch. Experts suggest donors tell also family members about their decision to donate.

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