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Super Nate

Samantha was told she couldn’t become pregnant, but just when she gave up, their little miracle Super Nate came along!

Because of her epilepsy and Bipolar disorder, Samantha had a very difficult pregnancy and was carefully monitored. On Christmas Day she was hospitalized with suspected encephalitis (inflammation of the brain), and in early January Nate’s movement slowed to a dangerous minimum. An ultrasound and a non-stress test showed that the umbilical cord was tightly wrapped around his neck.

On January 25, 2016, at 36 weeks gestation, Sam’s doctor said they couldn’t risk carrying him any longer and she went in for an emergency c-section. Sam says that she will never forget lying on the table in theatre as they finally got him breathing normally after 12 very long minutes of suction and rubbing when the pediatrician diagnosed Super Nate with bladder exstrophy, and was quickly whisked off to the ICU.

Bladder exstrophy is a rare congenital anomaly affecting about 1 in 50,000 in which children are usually born with the bladder outside of the body. There are often also abnormalities of the urinary tract and pelvic area. When the results came back, Sam and the doctors realized that Nate was both extremely lucky and extremely rare. It turned out that Super Nate’s bladder was inside his body; it was just very small with no skin or tissue covering it to protect from the outside world. Nate also had a double urethras, there are only 7 documented cases of males with similar cases.

Super Nate had his first, very intense, four and a half hour surgery at just four days old, after which he was on ventilation and full sedation for 5 days. At 10 days old, Nate had his second surgery.

By 7 weeks, Nate was still in ICU and they ordered an abdominal ultrasound. Nate was born with 2 kidneys, at the ultrasound after the surgery Nate had 2 kidneys, at 7 weeks the pediatrician called his mom and told her that Nate appeared to have lost a kidney. Nate came home from ICU at 7 1/2 weeks without an explanation of the lost kidney, but the doctors have since discovered that somehow the two have become or ectopic kidney. Living with just one kidney will mean his salt intake will have to be monitored. His life will be made up of regular check ups, tests and scans.

Nate has had multiple surgeries since. At around 7 months it was discovered he had GERD (gastroesophageal reflux disease) and malrotation of the bowel. He needed surgery to repair both of these and had developed a severe food and bottle aversion so we had to have a PEG put in to feed him straight through a tube into his stomach. Just after he turned one he had another major abdominal surgery and we are waiting to schedule a ureterostomy any day now in order to save his kidney.

Samantha says “I see the most extraordinary little human being…so forgiving…with an exceptionally strong will and determination. I see a smile…and I wonder to myself, how the heck can this child smile so much after all that he’s been through?”

Super Nate has the power to capture the hearts. Super Nate’s anomalies are hidden but people always seem to notice that there is something different about him and they’re drawn to him. “I’m hoping that [the scars] will fade in time. I want to raise him with the attitude that the obstacles are just part of his daily life and I want him to have a sense of humour about things.”

Photos courtesy of Nate’s mom @samstone152 on Instagram!

Story submitted by Sam Stone, written by Tesse Cavanaugh

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