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MOD Squad Helps Families Make the Greatest Gift

"Mothers of Organ Donors" Work with Donor Families, Transplant Teams

By Joan E. Lisante
ConsumerAffairs.com

December 18, 2006

The Greatest Gift • MOD Squad Helps Families Make the Greatest Gift • Strangers to the Rescue: Living Organ Donations • "Angels From God:" Stories of Organ Donation • Organ Donation: How It Works • A Critical Need • Organ and Tissue Facts • Transplant Timeline --- • Study Eyes Payments for Living Organ Donors • Wealthy Saudi Received Liver Transplant Ahead of Other Patients • AMA Hopes to Increase Organ Donations • New Safeguards for Living Organ Donors

"How do I live without my son?" she cried. "Tell me how to do that."

Margaret Syrett of Albany, New York, knew she couldn't fix the unfixable for a mother who'd just been told her son was brain-dead following a motorcycle accident. But Syrett had been there -- her six-year-old son Ricky suffered a fatal brain hemorrhage while playing with friends in his backyard.

Syrett decided to "carry Ricky with me" by becoming a founding member of "Mothers of Organ Donors" -- better known as the MOD Squad.

Together with fellow founding mother Vicki Crosier, whose 17-year-old son Kyle died in a car accident, Syrett joined forces with the Center for Donation and Transplant (CDT) at the Albany, New York, Medical College to encourage parents facing the shattering loss of a child to donate that child's organs to one of the 93,000 people in the U.S. awaiting a transplant. The MOD Squad was the first program of its kind in the country.

1980 was a year to forget for Syrett and Crosier. Both lost children in what's usually considered a haven: home.

"Ricky was rushed to the hospital by a neighbor and I was summoned from a CPR course," recalls Syrett. "By the time I got to the hospital, my husband Dick had already been told that he was 90% brain dead and would we consider donating his kidneys. That was the start of my journey," she said.

Tragedy shoved Crosier, too, into a commitment she could never have predicted.

"Kyle was on his way home from a shopping trip with his best friend. As they pulled into our driveway, the car behind them hit their back bumper, sending their car into a ditch. Kyle was ejected and hit his head on the stone retaining wall.

"My oldest son Kevin reached Kyle first and started CPR. By the time the ambulance arrived, his heart was once again beating," she remembers.

The hours and days at the hospital are still vivid to Crosier: "If I close my eyes I can remember the noises, the smells, the absolute terror. It never dawned on me that my child could die. Surely they could 'fix' him -- he just had a bump on his head.

"But when I picked up his hand and held it next to my face, I knew that the thing that made Kyle special was gone."

Having lost another child, Kenneth, the day he was born, Crosier "knew I couldn't survive the death of another child and not have a part of him go on living, somewhere." The family decided to donate, and Kyle allowed two strangers to see and freed two more from kidney dialysis machines.

Syrett and Crosier crossed paths at The Compassionate Friends (TCF) in Albany, a self-help group for bereaved parents, siblings and grandparents. Syrett had sought help in explaining to her then 2 1/2-year-old daughter what had happened to her brother. When the leader of the Albany branch stepped down, Crosier offered to take over if someone else shared the reins. That someone turned out to be Syrett.

Although billed as MOD Squad's "founding mothers," Syrett gives Crosier top billing.

"Vicki is the energy behind this program. She was the one that got the grant to start reaching out for other MOD Squads ... Vicki was the first mom to go into the ICUs with organ procurement coordinators. Vicki is the key mom," she said.

Reaching Beyond the Horror

The two set out to fight ignorance and misunderstanding surrounding loss.

The Albany (NY) Mod Squad

"We used to hear horror stories of how bereaved siblings would go back to school and be punished for not doing their homework or acting out in class. No one seemed to realize the impact of losing a child," said Syrett, "so we started knocking on school doors ... then we tackled doctors who didn't understand the toll this loss took on people physically and mentally ... and then on to the churches."

"I finally got a call from a chaplain at a Catholic hospital who wanted to know what I had to speak on. I mentioned organ donation almost as an afterthought. Well, she jumped on that. I figured we needed to get more information and called the Center for Donation and Transplant (CDT) at Albany Medical Center."

Frank Taft was then Director at CDT, which oversees the retrieval of organs and tissues at hospitals throughout eastern New York State and Vermont. Although his organ procurement coordinators were first-rate, there wasn't enough hands-on support for parents in crisis. So Taft teamed up with Syrett and Crosier, and the MOD Squad was born.

Bill McTague, current Director of Operations for CDT, recalls a recent case.

"The family wanted donation and the doctor felt that if we didn't get to the operating room quickly, the donor's heart would give out. I spoke with the mother, father and brother quickly, apologizing for my haste. Vicki was with me and, when asked, told her own story. After completing the [paperwork] and saying goodbye to their son/brother, the brother asked if he could request one more thing. He turned to Vicki and asked if he could have a hug. It was especially touching to me at such a heartbreaking time," he said.

Someone Who Really HAS Been There

All MOD Squad members are volunteer moms who have lost a child and chosen to donate organs or tissue. Their main goal is to ensure that families are supported, whether or not they decide to donate. They offer whatever is needed: coffee, help with phone calls, parking or hotels, or simply holding a hand and listening to a story no one else wants to hear.

MOD moms undergo psychological testing to make sure they are up to the challenge. A volunteer's loss must have occurred at least three years ago. As Syrett points out, "When you step into these families' lives at such a vulnerable time, your first reaction is helplessness. It also transports you back to your own loss and you have to be careful to protect yourself."

Once trained and accepted to the program, moms typically are on call one week a month. Sue Bryant McDonald, lead MS Mom in Iowa, schedules herself and four other moms.

"I pray when a get a call," says McDonald, "and bring my son Aaron with me for extra support." McDonald's 13-year-old son Aaron was killed in an auto accident in 1994, when he and a friend took off in a Chevy Blazer with bad brakes.

Mindy Fischer of Memphis was approached when she was 8 1/2 months pregnant with her second child. Fischer's 2-year-old son, Will, had suffered a stroke and died in 1999.

"Vicki Crosier came to town and told us about the program," said Fischer, "I knew this was an opportunity, and I had to give it a try or I'd always wonder if I didn't do it. I really felt led to do it, and decided to take it a little at a time."

Fischer's late son Will became the focus of a public interest campaign in the Memphis area. Signs on buses proclaimed: "Will was a hero at two -- he saved five lives."

Patty Rynearson, an Iowa MOD volunteer, tells of a recent call she made:

"A young man (25) attempted suicide after his girlfriend had broken up with him. He was taken to the hospital, but never came around. The patient had been in the hospital for a week when I was called. They were ready to donate, but he had small brain stem activity. A few days later, the family asked if I could be there when they took him down to surgery and disconnected the respirator. I was really touched by the family and they appreciated that I was with them and could talk to them about anything."

Rynearson felt this was the best call she'd made, and she later attended the family's visitation.

Learning Curve

How do volunteers learn what to do in such delicate circumstances?

Training takes place at clinical competency centers located at medical schools. Volunteers perform practice interventions in simulated hospital scenarios with individuals playing bereaved family members, and get feedback from these family member "actors," grant staff and current MOD Squad members. These cases help volunteers become comfortable with providing support during traumatic circumstances similar to what they may have experienced.

Volunteers also visit a local organ procurement organization, getting an overview of laws governing organ donation, brain death, and other essentials.

Compassion and common sense also guide volunteers.

"You have to walk in with respect," says Fischer, "These people are having the worst day of their lives."

"Walking the walk" gives MOD moms their hard-earned credibility. Parents who've never lost a child can't imagine the enveloping grief.

"It's an incredible heaviness -- like wearing a lead apron," McDonald recalls. McDonald's daughter Audrey was just six when her brother Aaron died, and Sue walked around with her hand on her heart. Her daughter asked if mom's heart hurt and, not wanting her to worry, McDonald said no.

"Then, are you saying the pledge of allegiance?" Audrey asked.

Awareness of cultural differences is also a plus. Barbara Musto, lead MS Mom in Nassau County, New York, has worked with Hispanic and African-American families. In one case, she stayed with the extended family for 5 days, and later attended the wake and funeral.

"Sometimes a family will ask me things they don't ask the organ procurement coordinator. They feel freer talking to me, because they know I've gone through the same thing," Musto said. Her 27-year-old daughter, Karen, died in Florida 13 years ago.

After donating, families receive general information on who received their loved one's organs and how they are doing. Donor families and organ recipients can contact each other anonymously through CDT if they wish to. MOD Squad also provides literature on grieving, as well as a holiday packet. At the year anniversary of their loved one's death, CDT sends a remembrance card.

Branching Out/Measuring Results

MOD Squad has grown far beyond upstate New York. In the Midwest, it's partnered with the Iowa Donor Network, in the south, with Tennessee's Mid-South Transplant Foundation and downstate, with Manhattan's New York Organ Donor Network.

Liva Jacoby, principal investigator for the MOD Squad project (and Associate Professor and Director of Research at the Center for Medical Ethics at Albany Medical College) evaluates MOD Squad interventions, collecting data on where they occur, types of patients, family consent rate, hospital experiences and how families cope several months after the tragedy.

Jacoby's also had a chance to observe MOD's mission first-hand.

"The MOD Squad moms are an incredible group of women. I am constantly reminded of their courage and commitment as well as their sense of humor and warmth in the midst of tragedy and pain. My work with them has given me a deeper appreciation of the meaning of endurance, a strong spirit and all the gifts we are given, but often take for granted," she said.

Perhaps Crosier says it best: "Everyone knows organ donation is life-saving for the recipient. But I'm here to tell you it can be just as life-saving for the donor family."

Next: Strangers to the Rescue

Update

Since the original version of this story was written, Vicki Crosier and Margaret Syrett have taken on new roles. Crosier is now President/CEO of Family and Children's Services of the Capital (Albany) Region, still working with families in crisis. Syrett is retired, splitting her time between New York and Florida. She continues to give talks on bereavement for church groups in both states.

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