Imogen Jones
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Imogen on her first day at school
January 31st, 2000
Imogen's Story
We'd like to introduce you to Imogen, our beautiful 6 year old daughter. Imogen was a prem baby (25 weeks) and had to put up with many of the problems usually associated with this sort of a start in life. However, by the time she had turned 2 we really thought we had left all of that behind as Imogen was a generally very bright, healthy, active, lovable child. The only hangover from her early birth seemed to be a predisposition to chest infections and a persistent stridor noise which we were assured she would grow out of.
Over the next few years Imogen had a number of serious chest infections which resulted in several hospitalizations for pneumonia. She was diagnosed with asthma and put on a range of asthma medication as well as several courses of oral steroids which were used at the first sign of an infection. We were told that this susceptibility to chest infections was probably as a result of the damage done to her lungs when she was born (hyaline membrane disease) and that as she got older and stronger they would probably become less frequent. The stridor noise still remained, although it wasn't seen as being terribly important by any of the many medical people that we saw over these years.
Last year Imogen was again sick with a chest infection and ended up having a pneumothorax. During this visit to hospital she saw a different pediatrician who was immediately very concerned about the stridor and the possible connection between this noise and her respiratory problems. Although we had seen an ENT previously, the pediatrician referred us to an ENT surgeon who had just recently joined the staff at the hospital. Suddenly the stridor which we had all lived with for over 5 years was the focus of attention with concern that Imogen may have had a subglottic stenosis. The ENT performed a micro-layngoscopy and bronchoscopy which revealed that Imogen's vocal cords were paralyzed (BVCP).
We were then given a number of possible options - do nothing and take the risk that Imogen's respiratory problems might result in swelling which could lead to a total occlusion of her airway; have surgery to increase the size of her airway by removing a portion of vocal fold; or have a "permanent" tracheostomy. Since the first option was too dangerous for us to contemplate, we had to look at the second two which meant that we would have to travel 1500km from our home to Brisbane for specialist treatment.
After discussions with the pediatric ENT surgeon at the Royal Children's Hospital, we traveled to Brisbane in late Nov, 99. After having a look with a flexible scope the surgeon said that he thought the problem might not be BVCP, but rather a supraglottic web. He proposed to divide the web with the laser and stent the vocal cords using an ET tube. When he performed the operation the web was not as he had anticipated and he saw that her vocal folds were immobile, leaving a very tiny airway (one which he later described as being "incompatible with life"). He went ahead with the ET tube stent in the hope that it might 'free' the arytenoids, but was not optimistic about the chances of success. After an extremely difficult and uncomfortable week in ICU the stent came out and Imogen was again breathing on her own, but this only lasted for 24 hrs, when she went into respiratory distress and ended up back in theatre for a tracheostomy.
We were able to bring Imogen back home a few weeks after the trach, despite some misgivings on the part of the hospital because of our "remote" location. We live on Magnetic Island, near Townsville in Queensland, Australia. (You can see some pictures of our Island home if you point your browser at http://www.ozemail.com.au/~magislnd/ )
Since then Imogen has returned to Brisbane for a laser arytenoidectomy with the topical application of mytomycin C and the removal of some granulation tissue. We are waiting to see if this operation has been successful or if it will be the first of a series of progressive laser treatments over a longer period of time. In the meantime Imogen is coping well with her trach and was able to start Grade One of school on the first day along with all her friends.
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Update on Imogen, September 2003: It is staggering to think that almost four years have sped by since Imogen had her tracheotomy done. While things have not always been easy, Imogen has coped with the realities of life with a trachy very well and continues to be a beautiful, active and happy child.
The laser surgery done in 2000 was not successful in addressing Imogen's airway problems. Despite the application of mytomycin C there was significant grannulation on the site of the lasering. The surgeon in Brisbane suggested that the only way he could see forward was a process of continued lasering, in the hope of 'getting ahead' of the grannulation. The possible damage that this could cause and the lack of any real prospects of a positive outcome led us to choose to leave this option alone and to wait for something better to arise. In the next couple of years we saw a number of different ENT specialists here in Australia, as well as talking to a number overseas as we searched for some options.
To cut a long story short we have just returned from Melbourne where we met with A/Prof Robert Berkowitz. Dr Berkowitz is the surgeon with the most experience of LTP (ie reconstructive) surgery here in Australia and he assessed Imogen for a possible LTP. The prognosis was good, with Dr Berkowitz predicting a better than 75% chance of Imogen being able to be decannulated as a result of the surgery. We came home from the visit to make a decision about whether we would go ahead with this option or not, and in the end decided yes. We are now waiting for a date for the surgery, which will probably be sometime in January, 2004.
In the meantime, Imogen is busy doing all the things that Imogen does! She loves swimming, going to the beach, riding her bike and a lot of other things that we were told she wouldn't be able to do. She is in the school choir, is a member of a gymnastics troupe and is doing very well at school. Imogen, like the rest of us, is both anxious and excited about what the new year may bring. Hopefully, our next update will be a lot quicker than this one and will announce Imogen's successful decannulation!
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Imogen and Peter
- Peter and Sally, email: middleway@bigpond.com
