Gabrielle Dubois
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Gabrielle, our daughter, was born on October 16th, 2001, with a lymphangioma and an ischemic lesion. The right part of her throat was very large and kept on growing, so she had more and more troubles breathing. When she was 3-weeks old, she went through surgery to remove the cyst. It took about 7-8 hours, and she was kept in Intensive Care with morphine afterwards. Unfortunately, the inside part of the cyst kept getting bigger and we couldn't extubate her.
The surgeon decided then that a tracheostomy was the best way to deal with the problem, and she has been living with one since she was 5-weeks old. At first, we were very scared of the implications of this decision: how could we live with so much nursing care at home ?
After spending a few more weeks in the hospital, she finally came home on December 23rd, 2001, right in time to spend Christmas with her parents and her big sister, Juliette (born on August 5th, 1999).
During the following year, she kept getting sick all the time: pneumonia, bronchitis and so on. Until June 2002, I was tending her at home, but then we found a specialized day-care center close to home and I resumed working, but part-time instead of full-time). She has been attending this center from 9AM to 4PM since then. The staff is composed of nurses, pediatrics doctors and physiotherapists. They take care of her whether she's sick or not and try not only to improve her health but also her mobility. The ischemic lesion did have some impact on her left side, but she's surprising everyone and we keep working on it.
In January 2003, we were finally ready to decannulate, but in surgery, the operating team realized that her Epiglottis was still to big to allow her to breath freely and safely while sleeping and the process was postponed. It was very hard on us because we were so hopeful, but she was doing better in every other area so we waited again.
The pediatrician choose then to keep her under antibiotics to avoid as many respiratory diseases as possible and to allow her to grow more freely.
Two weeks ago, the surgeon did another check-up but nothing had changed. Therefore, we were told that she would have to keep her tracheostomy for several more months, or even years. To deal with this bad news, we decided not to wait any longer to find other ways to make her life easier. We stopped some reflux medications and tried to put a vocal aid to teach her a few words (the
"Shiley Phonate Speaking Valve" with Oxygen Port). She heard her voice clearly for the first time on April 29th, and we could finally enjoy her laughter, which was really incredible. In the mean time, she started walking (at 18-months) by herself.
As you can see, she's doing very well, much better than anyone could anticipate, and we are so very happy to share with her all these precious moments. Now that she can make sounds, we do not dread the waiting as much and feel that we can live quite well until then.
The message I would like to share with the other parents is to keep on believing that happy moments are still ahead, even when everything seems desperate. People adapt to their children needs and every achievement is celebrated with so much more pride when it was unexpected.
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July 2003
Marie-Pierre Vercruysse
Belgium
