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This is our beautiful daughter Amber. Today she is the picture of health and if you didn't know you could never guess that at one time her life was threatened by a very serious Congenital Heart Defect called Hypoplastic Left Heart Syndrome. But because of technology, some great doctors, a little luck and alot of prayers today she is a vibrant, dramatic, growing, beautiful little girl. |
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Amber Nicole arrived at 9:00 p.m. on July 25, 1996. She was born at York County Hospital in Newmarket, Ontario, Canada. I was induced twice at another hospital with the end result being that Amber somehow moved over and settled on my kidney. The hospital's maternity ward was scheduled to close for two weeks holiday (small town hospital) and as a result of Amber unwillingness to be born I was transferred to York County and into the very capable hands of another doctor. I was induced for a third time and after 12 long hours, Amber was coerced into making her appearance. The doctor noticed something odd in the placenta and immediately sent Amber to the special care nursery. We were assured that it was probably nothing serious. She was placed in an isolet with oxygen and they performed many tests trying to diagnose her problem. Before noon the next day, one of the special care nurses came in to talk to us and told us that it was serious and that they had called for the air ambulance to take her to the Hospital for Sick Children in Toronto, just an hour's drive away. We talked to the on call pediatrician and although he did not put a name to the problem, he accurately diagnosed the problem and explained that York County was not equipped to help Amber and for that reason they were sending her to one that could. They had performed an echocardiogram which had shown that Amber's left ventricle was missing. |
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The transport team arrived, intubated and prepared Amber for transport. The nurses took some polaroids of Amber and her dad and I. It was our first 'family portrait'. The helicoptor then transported her the 20 minutes by air to Sick Kids. We followed by car. By the time we arrived, an indepth echo had been done and the findings were conclusive. Amber's left ventricle was missing...not underdeveloped but missing entirely, never having formed at all. The condition was called Hypoplastic Left Heart Syndrome. We were to meet with cardiologists the next day to determine the course of action. We were given the usual options for treatment...transplant, 3 stage surgeries and compassionate care. Getting a newborn heart needed for transplant was unpredictable. We chose the surgery route. Unfortunately, Amber was born on a Thursday evening before a 'long weekend' and the surgeon that was to perform the surgery was not available until the following Tuesday, July 30th.Surgery went well and other than resolving a few issues with oxygen levels and kidney function, recovery went quite smoothly. Amber was released when she was 23 days old. |
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She went home on several medications including 1/2 baby aspirin per day, digoxin and a diuretic. The main reason for staying in the hospital even that long were weight related. It was finally decided that she would probably gain weight when she got home and into a routine. We were to bring her back the following week for a checkup. At that time, an observant nurse noticed that her colour was not the best and did a saturations test which turned out to be in the mid 50s. A cath was performed and no reason could be found for the low numbers. For this reason, it was decided that Amber's second surgery, a hemi-Fontan, would be performed at 3 months. On November 7, 1996 we again handed our little girl over to the surgical team. Recovery was swifter and without incident this time and she was released after 10 days. Her meds had changed as well. This time she went home on Captopril, 3 times a day, a diuretic and because she was participating in a study of ASA vs. Coumadin she would take a baby aspirin each day. |
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Two surgeries and hardly a scar! |
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When she was 26 months, she was scheduled for her Fontan. It was performed September 10, 1998. There were absolutely no complications this time and she was releases in just 6 days!
Amberıs meds have been changed a couple of times in the last year and a half. She was switched to Vasotec twice a day for awhile and then switched to Altace once she started school as it was only given once per day. She has been on a yearly checkup basis for the last two years and is supposed to have a cath and 02 exercise test in March 2003. Her cardiologist said after these tests she will be seen every 18 months. Itıs very unnerving to think about the span between appointments but we trust in Dr. Bensonıs judgment.
We have a beautiful daughter (and a handsome son who is heart healthy). We are forever in debt to both hospitals, York County for realizing what they were dealing with and also realizing that it was outside their ability to treat, and the Hospital for Sick Children for performing Amberıs life saving surgeries . |
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Amber has grown like a proverbial weed. At 6 years old, she is 58 pounds and stands 4 feet tall. We, of course, think she is the most beautiful little girl who has every walked the earth. She is enjoying Grade 1 and is veryproud of the fact that, although given the option many times, has never needed to rest during the physical activities that her class participates in. |
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Her teachers are all aware that she has a serious heart condition and Iıve done my best to explain it to them but I sometimes wonder if they realize the extent of it as she appears SO healthy and unaffected. Amber is aware that she has a heart condition but at this point only knows that it is a special heart. |
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The Creation
It was time for Him, to create a real special one,
One to admire when His work was done.
His best work ever, this would be,
For all the world, to look and see.
To her He gave all the normal things,
But with her, He used golden strings.
He spun her hair from threads of gold,
Her lips so soft, for the world to behold.
From the softest of silk He made her skin,
A loving hand to touch, a pleasure to have been.
Her legs made strong, for her to stand tall,
To be a guiding light to one and all.
He gave her his best, such a beauty to see,
Something still lacking, what could it be.
Oh yes He thought, the most important part,
To her He gave, a very, very special heart.
Now go my child, there is work to be done,
There is joy to spread, till each setting sun...... |
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people have visited Amber's world since March 25, 2001 |
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The graphics on this page were made especially for Amber using tubes and PSP 7. Please don't borrow them. If you like these graphics please visit Prrrrfect Pretties |
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