Woman thrives in Dublin 26 years after life-saving surgery in Omaha - Omaha.com
Published Tuesday, November 20, 2012 at 12:01 am / Updated at 4:03 pm
MORE THAN IRISH LUCK
Woman thrives in Dublin 26 years after life-saving surgery in Omaha

Her father bought her Cadbury chocolate roses and took her to lunch. Her mother made her favorite chocolate cake.

There were presents, parties and the desired menu — chicken, mashed potatoes and carrots.

Once again — gloriously again, unbelievably again — an Irishwoman with strawberry-blonde hair, a quick smile and a name that means “forever beautiful, pure, free,” celebrated a birthday.

Last week, in her native Dublin, Ireland, Sinead Jordan turned 26.

That Sinead (pronounced shu-NAID) could mark this milestone is a testament to science, to luck, to a willing doctor in Omaha and to persevering parents for whom the earth had no end when they got the devastating news that their baby would die.

This birthday is expected. Barring accident or illness, she should have many more.

But it is a grave and joyful reminder of another birthday that might not have come. A birthday far from home in an isolation room on the seventh floor of the Nebraska Medical Center. A birthday that offered a glimmer of hope but no guarantee.

***

The diagnosis came on a beautiful Saturday in June 1987.

Six-month-old Sinead Jordan had infantile malignant osteopetrosis, also called marble bone disease. She was blind and probably wouldn't live past age four.

Osteopetrosis is a rare genetic disorder that starts inside the bone marrow, in cells called osteoclasts that aid in bone growth. Without functional osteoclasts, bone replaces the cavities where bone marrow is stored.

The results are punishing. Bones become brittle and can easily break. Cranial bone growth compresses the optic nerve, causing blindness. It can cause deafness, facial palsies and hydrocephalus.

Victims can die from anemia, bleeding and infection. In the 1980s, a third of the children with the disease survived to age 6. There were no reports of anyone surviving to age 20.

The diagnosis explained why Sinead cried so much. Her bones hurt. And why she always seemed stuffed up. The bones compressed her sinus drainage. And why she had been so sickly.

The children's hospital in Dublin was not equipped to help Sinead. Personnel there told her parents, Tom and Gertrude, that there was no hope.

Tom recounted what a doctor said: “She was going to die.”

* * *

Devastated, the Jordans held Sinead. They wept.

And then they acted.

They talked to various doctors. They dug through copies of the renowned British medical journal, The Lancet.

Wrote Gertrude Jordan in a recent email: “We never gave up because you will do everything in your power when it is your child.”

Said Tom Jordan in a phone interview: “My sister tells the story. Up in Dublin, I just stood up one minute and said, 'This ain't going to happen. We're not going to let this happen.'”

Tom, then a 31-year-old human resources director for a tech firm, formed a team of friends and family and delineated specific goals — foremost, finding an expert.

“Everyone knew it was incurable,” he said. “But nothing is impossible.”

He drafted a letter begging for help and sent it to 93 foreign ambassadors in Ireland. Time, he wrote, was running out.

Ninety-two ambassadors wrote back. He received “a most beautiful letter” from Tehran, Iran. Someone in Karachi, Pakistan, sent medicinal powders.

The Jordans narrowed their search to eight foreign countries.

When the children's hospital that had diagnosed Sinead refused to let the Jordans take copies of her X-rays, Tom had a relative snatch the films. He took them to another hospital that made eight copies, returned the originals and sent the films all over the world.

Tom spent long hours at the Trinity College Library searching for treatments, doctors and places.

That's where he read an article in the New England Journal of Medicine. It told about a baby girl, a pediatric specialist named Peter Coccia and the world's first successful bone marrow transplant to treat osteopetrosis.

***

It was 1978, and that girl, Valerie Taber, was a 3-month-old in Minnesota with osteopetrosis. Coccia was a new faculty member in pedatric hematology/oncology at the University of Minnesota in Minneapolis.

Bone marrow transplantation had worked in mice. Given the grim prognosis little Valerie faced, no known therapy and this success in mice, a team of experts including Coccia tried it on her. The transplantation worked, reversing most of the disease.

Taber today is a 35-year-old social worker with a master's degree in New York City. She recently gave birth to her first child. She has limited vision and a facial droop due to the illness, but no other effects.

In 1987, Coccia and his wife, blood-bank expert Dr. Phyllis Warkentin, were recruited to Omaha to develop programs (pediatric bone marrow transplantation and stem-cell banking, respectively) at the University of Nebraska Medical Center.

Just as they were moving from Cleveland to Omaha, Coccia got a letter from Ireland.

Would he consider a bone marrow transplant for Sinead?

***

Coccia, who's still in Omaha, calls bone marrow transplantation anticlimatic.

A patient doesn't undergo the rigors of major abdominal surgery. Bone marrow, like blood, can be transfused through an intravenous catheter.

A genetic match is crucial. The best matches tend to come from siblings. Close genetic matches reduce the likelihood of graft vs. host disease, a not uncommon complication that can arise from bone marrow transplantation.

Sinead was then an only child. Ireland had no marrow donor bank.

England did, and of the tens of thousands of donors, 728 met the initial test for a potential match to Sinead. Further testing would determine whether there was a bona fide match. That cost the Jordans the equivalent of about $25,000. They sold their house in Dublin to fund it.

No match.

But then they realized they had a near-perfect genetic match in Tom.

Westminster Hospital in London had refused him, saying Sinead's disease was too advanced.

So he wrote to Coccia.

***

Before they left for Omaha, Tom and Gertrude bought a burial plot for Sinead.

If the transplant didn't work — and odds were against it — they would lay their baby girl to rest in the village in County Mayo, where four generations of Jordans had run a general store and undertaking business.

“I didn't know what I'd be like if I lost her,” said Tom. “And it was a way of battening down the hope that she was going to be cured in America.”

The long international flight in September 1987 included stops in London and Chicago. Sinead, who could only lie down, rested on a pillow on her parents' laps. She became a cause célèbre among passengers and the pilot, who invited them into the cockpit. One passenger left a check for $5,000.

At that time, few places in the United States could perform bone marrow transplants in children, who mainly got them to treat cancers such as leukemia and lymphoma. UNMC had just started its pediatric bone marrow transplantation program.

Coccia remembers meeting Sinead. She had the characteristic stuffy nose. The severe bone pain.

“Anytime that you moved her, at all,” Coccia said, “she started crying.”

Coccia first had to affirm that Tom indeed was a genetic match for his daughter.

Next he had to destroy Baby Sinead's immune system so her system could take the transplant.

Sinead started radiation and chemotherapy on Oct. 1, 1987.

On Oct. 9, the oily red bone marrow, extracted from her father's hip, started coursing through her little body.

On Oct. 20, Sinead started to show the first signs of success.

“She became a very happy, playful child,” said Coccia.

She would tap her hand against the side of her crib, almost rhythmically, said her father.

Tom and Gertrude took shifts at the hospital, living otherwise at a nearby apartment.

Omahans responded with warmth and hospitality. One couple opened their Holy Cross-area home to the Jordans. One woman brought gifts and then, over the years, sent Sinead thoughtful Christmas presents (like “Harry Potter” books in Braille).

The outreach helped sustain Tom and Gertrude over what would become a seven-month stay here.

“What kept us alive were the people in Omaha,” said Tom. “If you mention the word, 'Omaha' in my village, you wouldn't have to pay for a drink or a meal or a place to stay.”

Sinead's medical file, about an inch and a half thick, documents her progress.

By Jan. 4, 1988, doctors noted “significant remodeling of the bone since October.”

She was discharged later that month but had to stay in Omaha for checkups.

Developmental delays were shrinking. Sinead would always be blind, but she was catching up.

In May, the family returned to great fanfare in Ireland. They were national celebrities.

A trust the Jordans had set up to help pay Sinead's medical expenses continued to grow. The Jordans paid off all their hospital bills and used the remaining funds to create Ireland's first bone marrow bank in 1988.

***

Over the years, Sinead progressed.

She returned to Omaha in late 1989 for follow-up tests. She had some permanent cognitive delays. But she was getting at-home Montessori instruction and later a rich education that included music.

Sinead is a proficient drummer and can play other instruments including the piano and violin.

She developed seizures, but medicine has kept them at bay.

And she adapted to changes in the family. Brother James Peter (named for Coccia) was born in 1991. Tom and Gertrude later divorced, and Tom remarried and has two young daughters, Lola and Isabel.

With her brother, Sinead rocked out to contraband Eminem. And she loved it when her dad would pinch his nose to make an airplane pilot's voice say, “This is your captain speaking.”

“This would ultimately send Sinead into hysterical laughter,” James Peter wrote in an email.

Sinead lives semi-independently and relishes the community she has with other blind and disabled adults. She has responsibilities like lockup and recycling. She has hobbies like bowling.

She loves eating out, having coffee and coming home every other weekend. She spends summer holidays in Connemara. Her parents describe her as warm and kind, with the ability to accurately predict what day of the week a certain future date will fall on.

Her trust, in honor of her 25th year post-transplant, recently bought two new vehicles for her community.

Reflecting on how rich her life is and how far she came despite the odds, her parents say the most important thing they did was not accept the diagnosis.

“We could not imagine our life without Sinead,” wrote Gertrude Jordan. “We owe our gratitude to Dr. Peter Coccia for saving Sinead's life. We thank the people of Omaha for their kindness, generosity and good will.”

Contact the writer:

402-444-1136, erin.grace@owh.com

twitter.com/ErinGraceOWH

Contact the writer: Erin Grace

erin.grace@owh.com    |   402-444-1136    |  

Erin is a columnist who tries to find interesting stories and get them into the paper. She's drawn to the idea that everyday life offers something extraordinary.

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