Anshu Kumar
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a case of subglottic hemangioma and stenosis
Name : Anshu (age 2 years 3 months)
S/o : Rajneesh Kumar (email: rajnsh@yahoo.com)
Country : India
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Our little but brave soul Anshu was born on 29th Oct., 2000 in Aligarh, a medium town in India. It is difficult to tell about the joy of our 3 years' daughter Ananya to get so small brother. Though it was thru' Caesarian section, yet we were overjoyeous to get him. After 7 days in the hospital, all were home and back to normalcy. It was the time when a very small red spot was noticed near his ear and on lower lip. The doctor said that it is hemangioma and nothing to worry about it. The only precaution suggested to be taken was it should not be cut or damaged. So we were not worried at all. At the age of 5 weeks, he started making noisy breathing, this time the doc said it is cough and cold and gave medicines. But no effect of them was noticed. The breathing rate continued to grow with more noise. It was now said that it is Bronchiolitis and it was 23rd Dec. 2000 when he was admitted at Benaras Hindu University Hospital where immediate Oxygen and I.V. antibiotics and steroids were started to him. We were now the handicapped spectators continuously seeing him struggling for life under the transparent oxygen hood which was over his face. My parents as well as a whole lot of well wishers were there besides us and we were seeing him struggling!
The treatment continued for 16 days with a battery of investigations done over him but to no relief at all. Thereafter we shifted our Anshu to AIIMS, New Delhi with all risks of travel. It was at this place where he was diagnosed as having a big hemangioma over vocal cords blocking 75% of the airway. We were a bit confident that as the problem has been diagnosed, there must be some treatment. BUT, the same evening shivered us all when the doctor came to us and said there is no medicine for it and the hemangioma will grow further. They planned to try steroids for 3-4 more days. But no relief was sought! He used to cry for little air through out day and night and even oxygen inhalation was not doing any good. We were advised for tracheostomy but we were not ready for a hole in his neck. Seeing no other option on 19th January, 2001 we signed the consent form for tracheostomy and it was done on 20th!
After trach KTP laser surgery was advised to Anshu which was available only at Manipal and we took him there. Laser surgery was done to him there and we were advised to come after a month for 2nd sitting of surgery. They said that second time they will put a T-tube for some time. But after coming back to home, it was found that T-tube of such small size is available nowhere! We were advised then to wait and watch and simply maintain the trach. We passed day after day seeing him combating repeated infections and many other problems related to the trach. We used to sleep in shifts for the fear of getting his trach blocked.
Assessments done of his airway a few months back indicates that he is having considerable subglottic stenosis and Cincinnati people have opined after seeing all reports that he may need reconstruction surgery. My bad luck is that this surgery is not done in India and I can never afford going to another country for surgery. I am seeing this wonderful site and the message board since long time. It gives support and motivates me to try until the last hope.
