Back in 1985 I had my last unsuccessful major surgery at Toronto Sick Children's Hospital. This operation failed as my body actually opened up and "spit out" the tissue that was used to reconstruct my airway and my airway basically closed in right away again.
My parents and Dr. Fearon were at their whit's end. All of them just wanted me to be able to live without a treach. They decided that it would be a good idea to try dilatation's in Saskatoon under the care of Dr. Wright. I do not remember being consulted about this decision but it did have a great impact on the way my life went after that point. It was the beginning of one of the hardest times in my life.
For the first year I was put under anesthetic for a short period of time in Saskatoon City Hospital. This was fine. I got to know the nurses and orderlies and got them all trained into my routine quickly. I enjoyed the high that occurred which gave me energy to only go on 2 hours of sleep a night. I remember getting so much done during those nights. My creative juices just flowed so freely.
After the first year my parents and Dr. Wright decided to do the dilatation's without the anesthetic. This, in my opinion, was the worst decision ever made... but hind sight is 20/20 and I believe my parents were only doing what they believed was best for me at the time. They were told that there would be an extreme possibility that I was becoming addicted to the anesthetic and/or the fact that I was only getting a couple of hours a sleep a night and the fact that the drugs would keep me on a high for a continuing longer period of time each time I went under and after lengthy discussions with Dr. Fearon and Dr. Wright and the fact that the treatment would only be a minute or less in length they decided to give their consent. As the treatments progressed I became angrier at my parents and at the doctors. I wanted the treatments just to stop. I saw no point to them. They did not make any sense to me. I was just very frustrated with the lack of power I possessed to stop anything at that point in my life.
Dr. Wright recommended that we begin to see a psychologist at the University. This did no good. I believe that I was perfectly justified to feel angry and talking about it only made it worse... nobody understood... especially not someone who had never been through it. Over the years we also went to the McNeil clinic. This also was a waste of time. I believe the only way that counseling would have helped at all was to go through Christian counselling. Jesus was the only place I found comfort or help during these days. I couldn't understand people who were Christians and did things that were directly displeasing to God. Jesus is the great healer and the only true healing comes from Him.
To be sure, I ask many questions with regard to any treatments in my life and the lives of my children now and I am sure to avoid any un-neccesary treatments that could cause more long term pain and resentment than the result of the proposed treatment or test. I have learned just by asking questions, that much of what people allow doctors to do without questioning is not even necessary. It is just routine. This has helped me so much in my work as a doula. I have learned much about hospital procedure and routine and how to get around certain "routine" procedure's that really do not affect the health of my client or the baby. I am also able to do this while keeping and gaining the respect of nurses and doctors that I have worked with. My mom also learned to ask more questions after all of this.
June 1987 was the month I turned 13 years old. It was the end of one of the hardest times in my life. My mom and I had flown to Toronto for another "routine" check up in Toronto Sick Children's Hospital. It was also the last time that Dr. Fearon would be my surgeon there. He retired before I returned to Toronto in the summer of 1990.
On June 9th, 1987 I went in to be scoped. This was when I would be put under anesthetic and the doctors would get a good look at what was happening with my airway. I was absolutely fine with this procedure. It was like a family reunion every time I returned to Sick Kids. I had the nurses trained to allow me to walk down to the operating room and sit up until I would fall asleep. I also had them trained to not put in the IV until I was sleeping. I found it quite peaceful to wake up in the recovery room knowing that all had gone well. A little bit of a sore throat but nothing that Popsicles couldn't take care of.
One June 10th, 1987 I turned 13 years old and woke up with an INDEPENDENCE BADGE on my pillow. This meant that I could go down to the 4th floor all by myself. This is where the big play room and teen lounge were located. The nurses threw a small party for me with a cake and a few presents. I also got a day pass and went out for supper with my mom and Jenny Joynes (who had known me since I was first admitted at 15 months old). It was a good birthday.
On June 11th, 1987 my mom and Dr. Fearon discussed where to go next with my treatments and options. They came to the conclusion that there was nothing that could be done until I was older and that I really needed a break from the treatments and experimental surgeries. This was definitely welcome after the treatments that I had undergone for the past couple of years. This was a huge answer to prayer but not the end of my anger or confusion.
In the summer of 1990 it was time to go back to Toronto Sick Children's Hospital. Little did I know that it would be my last time being admitted to that hospital.
When Dr. Fearon had retired all of his cases were handed over automatically to Dr. Johnas. By the grace of God my case was the only one put on the table for discussion of who would handle it. As a result Dr. Crysdale took on my case. After the routine scope in July 1990 the recommendation was made for a referral to Dr. Patrick Gullane at Toronto General Hospital. This was a highly controversial move for two reasons. First of all there was a doctor at Sick Kids that wanted to take a crack at my case. Second it was very rare for anyone under the age of 18 to be admitted into Toronto General Hospital.
Despite the controversy Dr. Crysdale still went ahead with the referral. He called over to Toronto General and Dr. Gullane said that he would see me only if I had a CT scan first. The waiting list was really long. We got word that there was a cancellation and I could have a CT scan in 20 minutes. I was still in my PJ's. We had never moved so cast before or since I am sure! Within a couple of hours we were talking with Dr. Gullane and two options were presented.
We returned to Saskatoon a few days later to contemplate what we would decide to do . For the first time in many years there seemed to be realistic hope presented to us. The way everything came to this point was definitely a God thing!
The following is a letter that my mom wrote to Dr. Crysdale in July 1990 to update him on what had happened up to that point in my life... medically speaking.
July 20, 1990
Dear Dr. Crysdale:
The following is a recollection of the events of Terrie's medical procedures. The chronological order may not be correct, but the spelling my be even worse.
Approximately 6 to 8 hours after Terrie was born on June 10, 1974, (7lbs, 7oz) her one lung collapsed, resulting in a catheter too large for her trachea to be inserted. This is my memory not the medical records, gleaned from explanations given me by the nurses as to why her breathing was raspy. The pediatrician in charge left the impression that she almost died and they worked on her for "quite a while". It is my belief that she was born with a strider or narrower trachea than normal which the medical staff was unaware of.
By age one year she was unable to crawl around and play without beads of perspiration forming on her forehead. Her raspy breathing became a loud "noise like a donkey" when she became excited. After I pushed to have another opinion she was referred to Dr. Wright, who immediately admitted her for in drawing of the chest and shortness of breath.
She was thought to have cancer in the neck region or some sort of blockage, but during this surgery this was proved wrong. She was misdiagnosed by the attending surgeon who I believe took a biopsy of several treachea rings to see what the tissue was that was blocking her breathing. (I believe this act destroyed her trachea because tracheal rings do not regenerate themselves). Dr. Wright returned from convention and being noticeably upset as to the proceedure that had been taken in the operating room, arranged for Terrie to be taken to HSC in Toronto under Dr. Fearon.
On October 10, 1975 Terrie was trached by a stab trachea procedure in that they were unable to intubate her with even the smallest catheter. Everytime Dr. Fearon talked to me from that time, he would remark about the miracle that Terrie was alive and had made it this far. (From here it might be beneficial to call Dr. Fearon or I understand he still comes in to a clinick here at HSC.)
Many surgical procedures were tried to first creat a passageway for her to breathe followed by using ths to create an airway.
The Fearon-Cotton procedure was tried.
A series of stents were used to try to get the scar tissue to work for us. Some were anchored in with the tracheotomy tubes (a nightmare to maintain), these stents were the same size as her trachea tube (I have at least one of them at home). For a period she had a narrower tube (perhaps 2mm in diameter) running through her nose and out through her trachea opening. These were interfering with her swallowing food.
Another procedure that was tried in her preschool years was to take a cartilage from her rib to try to reconstruct.
When she was 11 years dura or durale tissue (brain tissue from a donor) was used as an attempt to create an airway but her body didn't like it and opened the sutures and "spit it out".
She was dialated on a weekly (or every 10 days) basis after that for a two year period. This was done in Saskatoon. For the first year she was put under a general anesthetic for 10 minutes. She reacted to the drugs and eventually remained "high" almost all week. It was then requested that these be continued without anessthetic. At times it would take 5 of us to hold her and she had had enough of "trying". At 13 years when we realized all of the stress of the past two years had been in vain, I also was in no frame of mind to try either.
The past year has been a rollercoaster of emotions. In addition to growing up, she has had to cope with the fact that she really does have a handicap and it really does influence what she is, does and who she associates with. She has had severe depression bouts, to anter at the medical personal for doing this to her, to a new wish to have it 'fixed'.
I know Dr. Fearon was very frusterated with Terrie's medical problem and had probably tried everything within his scope.
I believe presently she has no tracheal rings in the area that is directly below her larnyx. I also believe that she can push air through that blockage but every breath is like blowing up a balloon where the opening has been chewed shut. I am also inclined to believe that her larynx may be damaged, paralyzed or whatever.
Terrie is a "good" treachea child. She has never had blue spells. She maintains her own trach since Grade 1 and does not follow any of the rules of tracheotomy sterilization taught to her!
Yours Truely
Kathy Hildebrandt
p.s. one of the largest maintenance problems with her tracheotomy is the food drainage around the trachea (not being aspirated either). This accompanied with very few nerve endings left in this area becomes a major problem.
