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Our Kids - Meet William

Although just one year old, William has spent more time in the hospital than most do in a lifetime. William, affectionately known as Will, has undergone two major surgeries - brain and cleft palate - and countless tests including ultrasounds, CT scans and MRIs.

William, Pierre Robin Sequence

While Will was still in the womb, doctors discovered he had an intracranial cyst in his right temporal lobe. When he was born on March 3, 2008, they noticed he had a cleft palate and a recessed chin. Will spent 10 days in the NICU at a local hospital and endured countless tests before he was transferred to The Hospital for Sick Children via ambulance for more specialized care.

At SickKids, Will's parents learned that he had a condition known as Pierre Robin Sequence. This is a condition in which there are a combination of birth defects, often including a small lower jaw, cleft palate and a tendency for the tongue to "ball up" in the back of the mouth. As a result, Will has had a lot of difficulty eating and breathing. In fact, Will needed a feeding tube inserted to make sure he received his daily caloric and nutrition intake. He also required a special tube to be inserted into his nose at night to help keep his airway open.

After three months at SickKids, Will was able to go home for the first time. And by early July, he was able to eat on his own and his feeding tube was removed. That same July, he returned to SickKids to undergo brain surgery to drain his growing cyst, now close to seven centimetres in diametre. Two days later, Will was well enough to return home.

On April 7 of this year, Will underwent cleft palate surgery, marking a large milestone for Pierre Robin babies. He was able to come home after three days and is recovering well at home, so much so, that he is right back into the fold with his two older brothers.

Will returns to SickKids often for checkups and tests. Doctors at SickKids are keeping close watch on his palate, cyst, hearing and eyes, among other things. Will has recently been given a clinical diagnosis of Stickler's Syndrome, which can affect his joints and is believed to be the reason why he was born with Pierre Robin Sequence and is near-sighted.

Despite the struggles Will has faced in his first year of life, his parents are forever grateful to SickKids: "We are acutely aware of our profound gratitude for SickKids. It continually amazes us how an environment that is undeniably emotionally charged has been the most calming and safe space for us throughout Will's life. Each and every day we are thankful for the staff at SickKids for being who they are and for doing what they do."

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