Leela Menon
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We are from Chennai, India. Our daughter Leela Menon is now 4 months old (B'day May 11, 2003) and had strider from birth. Her pediatricians assured us that this was due to Laryngomalacia and would go on its own. One month back she started vomiting whenever she took milk and had difficulty in breathing.
We had taken her to the hospital and they had her nebulized 3 times and still her condition was not any better, so she was moved to Pediatric ICU. There she had a severe respiratory distress and an emergency Tracheostomy has performed because they couldn't place an ETT tube due to a stiff subglottic obstruction.
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Fixed endoscopy as well as fibreoptic test revealed that she has Congenital Subglottic Stenosis and this should be surgically fixed once she is 1 year old or more. We have learned from the hospital how to take care of the Trach and waiting for the day when our baby is going to be decannulated. We found that this particular surgery is not done in India and so we are looking out for the best, but economical option for our daughter. Both of us are 26 year olds and just starting out on our third wedding anniversary. Your site has been an immense help and support to our grieved hearts. God be with you always and with all other parents who have to go through HIS tests.
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Update, July 2004: Leela [1 year and one month] was decannulated on the 10th of June 2004 at Robert Debre hospital, Paris, France by Professor. Thierry Van Den Abbeele. We are back in India after her surgery and its two weeks since now. She is doing well and is scheduled for endoscopies. I am copying the doc's procedure as well as leela's follow up to benefit other parents who will reap benefits from the same.
Thank you so much for this website without which we could never have survived leela's trach life and care.
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Doctor's Procedure: Leela Menon has been operated on the 26th of may in my department in Robert Hospital in Paris. She presented with a subglottic grade III congenital laryngotracheal stenosis located to the cricoid beginning 3 mm below the vocal folds. Laryngeal mobility was normal. The trachea between the lower part of the stenosis and the tracheostomy loked healthy but with some degree of malacia.
I chose the following surgical strategy in order to reduce as much as possible the need for Intensive Care Unit : to do a Crico-Tracheal Resection (CTR) keeping the tracheostomy in place. However during the surgery I found an unexpected situation : the tracheostomy was placed laterally to the trachea with some degree of tracheal cartilage necrosis. Despite this "bad" surprise, I performed a cricotracheal resection with complete removal of the cricoid ring together with the stenosis, drilling with diamond burr of the cricoid plate that was very narrow such as in an elliptic cricoid, and thyro-tracheal anastomosis with PDS 4.0 and 5.0 sutures. The tracheostomy was placed in proper position, medially, 1 cm below the previous tracheostomy. Necrotic tracheal cartilage was removed and replaced by a cartilage graft harvested from the left thyroid cartilage alae and secured with PDS sutures. A "homemade" stent was placed above the tracheal canula in order to avoid anastomotic stenosis. Post-operative period was almost uneventful except two episodes of 40°C fever without clear explanation. Finally, the stent was removed 5 days after the surgery. One week after stent removal, there was some degree of edema and tracheomalacia in the region where the cartilage tracheal graft was placed and I decided to perform 24-48 hours of naso tracheal intubation together with systemic corticosteroids. Leela had the "very good" idea to extubate "herself" only after 24 hours and breathed very well. The laryngotracheal diameter looked perfect just before she was discharged to India. The vocal cord mobility is normal. Corticosteroids and omeprazole were continued. I am personnaly very happy of the result of this "acrobatic" surgery and very confident now to the final result.
However, Some swallowing disorders can persist during several weeks especially with liquids.
I think that endoscopic follow-up is absolutely mandatory within 1 month, 3 months, and every 6 months during one year and since then every year during 5 years. Concerning GER treatment, I think that omeprazole should be continued during 3-4 months and primperan until she will develop perfect walking (1 year more).
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We are eternally thankful to Dr.Ramachandran, Chief of PICU, Kanchi Kamakoti Childs Trust Hospital, Chennai, India for the support and guidance without which we could never dream of a normal life. He was instrumental in putting us in touch with Professor Thierry Van Den Abbeele and Dr. Jean Hartmann [in the picture with beard] of Robert Debre Hospital, Paris . Thank you both from the bottom of our hearts for a dream that came true in Paris and for the support without which we could never have survived in a foreign land. We will always remember you all and your kind staff in our prayers.
Thanks and Regards,
Arun Menon and Muktha Menon
You can contact me at arun_pr@yahoo.com
