Monday, August 17, 2009

Mother Shares Story of Her Baby's Short but Beautiful Life, After Diagnosed with Fetal Abnormality

"A Beautiful Life: 30 Days of Pure Love," she calls her story

By Patrick Craine

August 17, 2009 ( - The mother who wrote last August sharing her choice of life for her unborn son with fetal abnormalities has written now, a year later, to share the powerful and moving story of her son's 'brief, beautiful life.'  Her letter was published in the Ottawa Citizen on Friday.

Last summer Genevieve Lanigan wrote to and Dr. Margaret Somerville, one of Canada's leading ethicists, to share her experience of choosing life for her unborn child. Genevieve and her husband, Barry, had discovered with great joy after 7 months of marriage that they were expecting. While Genevieve's pregnancy appeared to be progressing healthily, the couple were shocked to find out after their scheduled 20-week ultrasound that their child suffered from a hole in his brain stem, fluid in his brain, and a severe heart condition. 

Genevieve, a practicing Catholic and a teacher in a Catholic school, recounted how she was offered a 'termination' from her doctor, a 'treatment' that statistics show is all-too-often offered and accepted. In the case of babies diagnosed with Down syndrome for instance, the abortion rate is as high as 95% in some Western countries. For Gevenieve, however, "[this] was not an option."

The expectant mother persevered in choosing life, not knowing how long her child would live.  "The little one in my womb is moving around, kicking his mother, and hopefully enjoying a refreshing swim," she wrote at the time.  "I am carrying this baby as long as he will let me, and will not be the killing hand."

Pledging not to pursue extraordinary means, she said, "Our prayer is simple: That we will get to meet our little one, tell him that we love him, and watch him fall deep into a sleep that will bring him to heaven."

Genevieve wrote to Citizen readers on Friday, responding to requests from readers to find out the end of the story. "Dr. Somerville has told me that many people have been wondering how the pregnancy ended," she writes.  "So, I would like to tell you that part of our story, which I lovingly sum up as 'A Beautiful Life: 30 Days of Pure Love.'"

In early September 2008, less than a month after her first letter, Genevieve went into lab our, at around 35 weeks gestation.  "At 11:30 p.m.," she says, "4-lbs.-11-oz. Joseph Earl Francis was born via C-section and handed directly to his father, breathing on his own, and heart beating strongly. Barry and I quickly fell even more in love with him."

Kept in hospital for several days after the birth, little Joseph "was the centre of attention for each of his visitors who held and kissed him all hours of the day and night."

"On the Monday following his birth ... we were able to take Joseph home to live out the rest of his life and to die peacefully," she says.  "Once a week, members of a palliative care team visited Joseph, assessed his heart and lungs, and helped us to prepare for his death."

"For three weeks at home in Rockport," she goes on, "Joseph continued to astound people with his perfectness and gentleness as he had at the hospital.  His popularity never dwindled and he was held without complaint almost all of his life. He made valiant efforts to nurse and we felt he was fully present with family and friends."

Joseph's life, though brief, was filled with joy.  "For each day of his life, Joseph entertained no less than two visitors a day, was read to, sang to, and told over and over again that he was the cutest baby in the whole wide world," Genevieve says.

Loved and nurtured by his family, Joseph's pain worsened leading up to his death.  "On the weekend before his death," she recounts, "Joseph struggled with the pain he must have felt from the worsening of his head condition that caused both the shape of his skull and weight of his head to change. Two days before his death he was given morphine for pain, and though he still seemed somewhat content, it was clear that his time on earth would soon end.

"At 11:30 a.m. on the first day of October 2008," she says, "after being read to and kissed by many of his family members, Joseph went to rest forever in his daddy's arms."

"The 30 days of our son's life will never be forgotten by our family and the many friends who supported us on our journey," she says.  "Looking back, we regret nothing. ... We are pleased that we gave him the chance to live and that we loved him the best way we knew how. ... Sad as we are to live without him, we feel grateful that he is a saint in Heaven, bearing no pain and feeling ultimate love."

She concludes her letter by reflecting on the comments of a friend, who "thinks the small dash on gravestones that indicates the 'between' of birth and death can explode with meaning depending on the life attitude one chooses."

"Upon reflection," she says, "I figure that regardless of the short distance between the dates before and after his dash, Joseph's dash counts because it signifies love; love to stay living inside my womb, love to meet us; love to fight for his life; and love to die peacefully when it was time. His was a beautiful life   30 days of pure love that sure did count."

See Genevieve Lanigan's Friday letter in the Ottawa Citizen:

A brief, beautiful life 

See related coverage:

A Letter from a Mother with an Unborn Child with Foetal Abnormalities