Indira Rose-Helen Margaret Garrett
Diagnosis: Bilateral Vocal Chord Paralysis/Slight right sided tongue deviation/ Reflux,
Micronathea
Treatment: Tracheostomy and Mic-Key button.
Hello, We are Kelly and Mike Garrett and this is baby Indira. Indira was born Apr 23, 2002 at Mission Memorial Hospital in British Columbia Canada. April 23 started out filled with promise and anticipation, after 4 days of labour on and off we knew that this was not a false alarm and proceeded to hospital. I assumed that this delivery would be very similar to the birth of our first child, easy and totally uncomplicated. Upon arrival to the maternity ward I was examined and encouraged to relax in the spa tub as I was only 4 centimetres dilated and not progressing quickly enough. The stint in the tub was extremely short lived and after 10 min I stepped out, laid down and delivered Indira right on the floor of the washroom. Indira was delivered by our wonderful nurse Kim Vallet and when I looked up I realized that about 15 people were gathered around watching me give birth, including our fantastic doctor Jeffery Kornelson who was pinnacle in saving Indira's life. Indira looked at me lovingly and made what I thought were cute little noises, at that she was whisked away for a clean up and exam. I couldn't wait to get back to my room to fawn over my perfect newborn. As I was being tended to I asked my sister to please go check the baby and come give me a report as I had not heard her cry. Minutes passed by and I realized that my sister had not come back, all I could think was that something was terribly wrong; and it was, my sister was hiding because she could not face me. I then heard someone yell "get me the crash cart" and my greatest fears were confirmed. The rest of the day was about waiting until the wonderful life flight team arrived to take Indira an hour and a half away (by car) to Vancouver's Children's Hospital. Mike and I were given a list of possibilities of problems and Bilateral Vocal Chord Paralysis was the last and most rare possibility, we were encouraged not to give it another thought, well in retrospect we should have thought long and hard because that is exactly what it was. I find with this particular disorder there is so much uncertainty and no one was sure what the cause was,
never mind the prognosis. Mike and I have been given a large recovery statistic from the ENT's but Neurology has given us a 0% recovery rate because of the fact that Indira has a slight tongue deviation. Neurology claims that some of the nuclei in the brain stem did not form properly so there is a great debate back and forth and Mike and I can only wait and hope . We spent 14 weeks in hospital and like many of you out there went through every emotion and fear possible. There was a possibility that Indira could have squeaked through without a tracheostomy but in the end she could only breath for 12 hours and then her little body petered out, which was a huge leap from birth when she needed resuscitation. I remember many days filled with tears and I remember our primary nurse Karen Murray pulling me up by my socks and putting all of the positive things about Indira in perspective and forcing me to recognize them, Karen has so many gifts and that is one of them. There was never a question about whether or not Indira could orally feed the only concern was food aversion, Inidra grabbed that bottle and just scarfed it back but after a swallow study 3 weeks later we learned that she was aspirating part of her feeds, so to our disappointment and heartbreak baby Indie went back into the operating room for a Mic-Key button. The only feeding issue these days is a nasty case of reflux but even that has improved. Mike and I have seen a huge improvement in
Indire's tongue and that was confirmed by the Occupational Therapist, so we are thinking there has to be some nerve regeneration. Indira is making quite a lot of noise through her trach and her cry has become louder and more controlled, we have no idea if this means anything because we knew Indie could cry prior (but never like this). I suppose we will just coast through life now thrilled that our daughter is home. Mike and I were told how hard having a trach child at home could be, but honestly it is easy and she is such a little
joy. I think having love and support is pinnacle in your mental survival and this experience has just cemented my marriage. We also are so grateful for our families and good friends. I work at a spa in town Mackie Naturals Studio and Spa and the support we received from the owners Robbie and Keith and all of the staff and clients was phenomenal. Thank-you to the Special Needs Unit headed up by Dr. Robert Adderley better known to the kids as Dr. Bob. The staff in the
"SNU" are in a league of their own and they felt like family. I have read so many of the stories of the children on this site and I think if we could harvest the strength and courage of the parents and children the world would be a better place in general. We have watched Indira go through more than any child should and come out of it still smiling and trusting people. I am amazed at her will and strength. We have no idea what our future holds but Mike and I are both sure that Indira will help us cope and strive, it is amazing what a little bit of love can do for the soul. Indira and big sister Maisie have become best friends and I can't wait to see there relationship flourish as time goes on. We are grateful for so much and we love you Indie and
Maisie. We have a bronchoscopy scheduled for early September so we will hope for some good news and even if there has been no improvement just having Indira is good news, we will keep you all posted.
Update Oct 18 2002 - The end of September was a bit stressful as Indie ended up in Hospital with an infection but as usual her strength pulled her through quickly. We have asked our darling little Maisie not to bring "bugs" home from preschool anymore, Maisie said she would try her best but no promises. We just had our broncoscopy with Dr. Kozak and there has been no improvement in the chords, however the good news is that the paralysed tongue (on the right side) seems to have resolved and Indie has almost complete function; it looks slightly off but the function is there. Dr. Kozak and Dr. Bob also noticed that her throat is lifting much more than it did before so we may be able to discuss oral feeding in the new year, yay! Thanks a million to Nanny and Poppy Cameron and Grandma and Grandpa Garrett, we couldn't have done it without you.
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- More Photos
- New Photos Aug 2003
Anyone who would like to lend any information or moral support please email mike_garrett@shaw.ca. If you have any further questions please feel free to contact me.
