Following a very smooth pregnancy during which I experienced zero morning sickness, at forty-one weeks and a lengthy labour of 72 hours and 12 minutes, our baby was on the way. During labour, I had made 3 trips to Guelph General Hospital before dilation was enough to be emitted. Our baby boy was born in January 2017 and was perfectly healthy. There was no suspicion of any medical issue.
After I realized his left leg was larger than his right, he underwent a bunch of testing when he was 3 months old at both Guelph General Hospital and McMaster Children’s Hospital, where Brantley was diagnosed with Hemihypertrophy. This is an overgrowth syndrome, and literally means one body part bigger than the other. Brantley’s left leg is millimetres longer and wider than his right leg. Fortunately, he is not affected anywhere else in his body.
At 7 months of age, it was noticed that his AFP levels were at 59 ng/ml (normal levels are 8 ng/ml). AFP stands for Alpha-fetoprotein. It is a protein that can be found in the blood and is a marker for tumours and other types of cancer within the body. If a patient has something cancerous in their body, AFP levels will rise. He was then tested for BWS and the tests came back positive. His diagnosis of Beckwith-Wiedemann syndrome was confirmed. This puts him at a high risk of developing tumours in his liver and kidneys until the age of 8 years old.
Brantley has been getting ultrasounds on his abdomen and regular blood work to measure AFP levels every 3 months, since his diagnosis. In January of this year, his AFP levels remained steady at 1.6 ng/ml for a solid year and we were informed that the blood work was no longer needed. He will continue to be monitored with ultrasounds for the next 4 years. Brantley has had a strong team of doctors through McMaster Children’s Hospital and is cared for locally by a Guelph pediatric team.
Today Brantley is a very happy, outgoing and extremely loving boy. He is very considerate of other peoples’ feelings and loves to show affection to his little sister and his family. He is very passionate about space and hopes to become an Astronaut when he is older. He just started Junior Kindergarten this year and has started to make many friends. His favourite part of school is playing with playdoh. He also has a love for retro themes such as Super Mario Brothers and Ghostbusters, which he is very excited for both of the upcoming movies!
Rebecca
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