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The Bennett Family

Madeleine & Emily Bennett

When Maureen Bennett was 26 weeks pregnant, an ultrasound created suspicions that there was a problem with the hearts of the twins she was carrying. On October 3, 1997, at 33-weeks pregnant, Maureen was rushed to hospital in Regina, Saskatchewan. An emergency C-section was performed. Immediately, there was a problem with the heartbeats of both her babies, Claire and Emily. ECG's were taken and forwarded to Edmonton. Long QT Syndrome was suspected.

Both Claire and Emily were placed in a neonatal intensive care unit (NICU). Despite the best efforts, Claire's heart was not strong enough and she died just after midnight on October 6, 1997. Emily, however, continued to maintain her fragile hold on life.

Emily was released from the NICU after seven-weeks. Her heart has responded well to treatment with beta-blockers and ECG's show a normal to borderline Long QT interval. However, because Emily has other medical conditions: Craniosynostosis & Goldenhar Syndrome/Hemifacial Microsomia, she has required on-going surgery and treatment. At the tender age of three and a half, Emily has already had her share of life's challenges.

When asked how she has coped with the death of Claire and the on-going medical challenges of Emily, Maureen Bennett responded, "With each crisis, I am learning to step back and reflect. Emily is not an on-going medical condition. She is my daughter. I am not only her caregiver but also her mother. I love and cherish her. This thinking process not only helps me cope with a momentary set back, but it has helped me appreciate the small, incremental steps and remarkable progress she has made."

Maureen and Peter have since had another baby. Madeleine is now two years old and at this point appears to be unaffected by the medical challenges of her sister.

Maureen uses the Internet to stay abreast of developments in areas of medical treatment for her daughter Emily and to connect with others who need support and understanding. "I think it's important for those who have these experiences to share with others who are new and to help them come to terms with it all," she says. Maureen was instrumental in starting the egroup that can be accessed from the contact page of The Canadian SADS Foundation website.

Early in 2001, the Bennett family re-located to Halifax, Nova Scotia. Despite her challenges, Maureen’s upbeat personality and optimism continue to be an inspiration for us all.

Submitted Spring 2001 by:
Maureen Bennett, Mother of Claire, Emily & Madeleine
Halifax, Nova Scotia

Sadly, since the publication of this first story, Emily has passed away. In remembrance of her, the Bennett family would like you to view Emily's story on the website of The Canadian SADS Foundation.


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