Angela-Marie was born on December 28, 1989 with great anticipation. Throughout the pregnancy, numerous ultrasounds were performed because cysts kept showing up in different places on the fetus. An ultrasound was performed on her fontanel and a choroid plexus cyst was apparent-doctors said it would be all right-not to worry they said. Three weeks after she was born, she had an episode of not breathing while being held asleep. The same thing again at seven weeks. The pediatrician admitted her in hospital for testing-nothing showed up so Angela was discharged with a cardio-respiratory monitor and I was taught CPR.

For the next two years, our baby had apparent seizure like activity-numerous EEG's and chest x-rays didn't show anything. Over her first two years of life, numerous anti-convulsants were tried to control the seizures-still very little control. The drugs went from dilantin, phenobarb, valproic acid, clobazam and ativan. Of course, this all was done with great detriment to baby i.e. developmental delays, walking delays, speech delay etc. As this was all going along, Angela had regular apneas above 20 seconds and regular periods of bradycardia below 60 bpm.

At age two Angela was taken to Toronto where a sleep study was performed. It revealed that she had apnea episodes with hypoxia. She was also found to be hypertensive-again we were told not to worry-"she'll grow out of it by the time she would be 3 years of age" said the doctor. At that point we withdrew all medications feeling that things were alot worse.

When Angela was about 3 1/2 we sought a physician in Hamilton, Ontario. She did a complete cardiac and kidney workup as it had never been done before. Angela was found to be hypertensive, had bradycardia, numerous enzyme levels that were abnormal. The doctor consulted specialists about these strange results and they said that they meant nothing.

Over the course of the next couple of years, the doctor periodically ordered oxygen saturation studies(again this hadn't been done the first two years of her life), and they revealed low oxygen saturations in the 70% range on occasion. Conclusions were drawn that perhaps oxygen therapy at home would be beneficial. Still, a definite diagnosis couldn't be found that would encompass all of these strange things happening to Angela.

In 1996, I started searching through the internet. Surely there had to be someone out there that knew something. Finally, we found another family in Chicago that had a child very smilar to Angela. In fact, it seemed so bizarre how similar these two girls were-right down to their age being only a month apart. After a year of writing and talking back and forth, the mom in Chicago (Joanne Kocourek) recommended that I write her doctor in Milwaukee who has an interest in "difficult" cases.

After several letters to this pediatric specialist, it become clear that I had to take Angela to see him personally. He said that there were no guarantees that he could help, but certainly was willing to try. The process was started with the Ontario Health Care system to get approval for funding. The local government representative, Elizabeth Witmer, did her best to clear the way, but after a few weeks it was clear that the government was not going to help us get to Chicago. The "powers that be" said that "her problem didn't seem to complicated, more physicians should be sought here in Ontario". Clearly a dead end! It was clear that we had to find our own way there and also raise the funds ourselves-and we did.

In April of 1997 I took Angela to see the specialist in Milwaukee, Wisconsin. After several days of extensive testing, Dr. Rice made the diagnosis that we had been searching for for over seven years, Congenital Central Hypoventilation Syndrome or CCHS. This was based on his findings which were; bradycardia, apnea, high retained CO2 levels in her lungs from inefficient respiratory function awake and asleep, no heart rate variability, no ventilatory responses to changes in oxygen or CO2. We will forever be grateful to Dr. Rice for his extensive consideration, kindness, understanding and knowledge. Upon return home to Canada, equipment had to be purchased, doctors educated and lives to sort out. Even now when we have problems, the local physicians are at a loss as to how to handle Angela and her problems. For the most part, Dr. Rice has to be consulted frequently as the doctors are so unfamiliar with her condition. With so few children with this syndrome, a "super specialist" is what is required and our present physicians just don't have the knowledge or experience comparable to Dr. Rice.

There were numerous people that helped make this "miracle" happen-Special Hearts, Darlene Long (Co-Director) and wonderful friend, our local church community(Church of the Holy Saviour-Anglican), our local communities and friends in Stratford, Wellesley and surrounding areas, and Angelas teacher Ms. Carol McPhee. Without all of these people Angela certainly would not be at the place she is today. Their support and kindness has upheld us in the spirit of Gods goodness.

At present, Angela attends school mornings, comes home at lunch for her "Molly" time(she calls her machine Molly), and back to school for the balance of the afternoon. Life in our home is changed. It is difficult for sure, there always seems to be another complication popping up from time to time but at least we're on the right track.

Angela in her room with her "Molly" and other support systems.

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