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PAST ISSUES

A Celebration of Life: Maria Dupuis

by Ashley Hakala
Exchange Staff

     A little girl with dirty, blonde hair that slightly curls at her shoulders teeters into the living room.  She has a soft featured face and big brown eyes.  Her glow spreads throughout the entire room, touching each individual. Without a doubt, not long after she enters the room she will have the group rolling with laughter. Once she told her aunt that she was the prettiest girl in church. When her mom went to scold her she said, "Well I am!"  If not for her difficulty moving her right foot, that is severely slanted, one would never know Maria Dupuis has Amniotic Band Syndrome.

     Amniotic Band Syndrome occurs when the amniotic sac in a mother's womb erupts.  The bands from the sac then persist to wrap around the baby's body cutting into it, or cutting certain parts of it off.

     When Leah Dupuis was twenty- two weeks along with her fifth child she went to the doctors for a normal check up. The ultra sound revealed heart-wrenching news.  Her baby, who just a couple months ago had been completely fine, now faced life or death. The doctors assumed that the complications occurred at about twelve weeks. The baby’s spine had curved to an abnormal degree and its feet were clubbed. There also appeared to be a hole at the bottom of the baby's spine. All signs pointed to the chilling prognosis, the baby had spin bifida. However, the doctors wanted to make sure their diagnosis was correct, so they sent Leah and her husband Keith to North Dartmouth Medical Center, in Lebanon New Hampshire.

     "I'm not sure I see a hole," the technician told Leah.

     They would later find out that there wasn't a hole.  After further testing, the doctors assured the Dupuis's that their baby did not have spin bifida. However, the news they were about to give them was far less comforting; they were not sure what was causing the malformations.

     "It felt like eternity," Leah Dupuis said of all the testing. "I did three things: I blamed myself, I didn’t feel capable of raising a special needs child, and I didn't want the baby to suffer. It was scary."

     On July 18th 2002, six weeks early, Maria Dupuis entered the world, becoming a medical marvel with her first cry. She weighed 4 lbs. 13 0z.  Leah was allowed to touch her head before the doctors wisped her off into a precautionary resuscitation room.  "I cried initially. I was just praising God that she was breathing."

     Keith, however, followed his daughter into what the specialists called the "Panda Room." It was a room filled with specialists in all areas of the human body for special cases like Maria's. His daughter laid on a table with bright lights above her, doctors taking pictures on all sides.  His baby girl's body was encompassed by thin, slimy strands, the color of seaweed, wrapped around her entire body. Her feet were extremely deformed, her left foot had six toes, and her right foot was bent all the way back to her shin.

     "I didn’t know what it was. You can’t prepare yourself for that."

     Keith had to go back and tell Leah what he had saw in order to prepare her for what she didn't see during the delivery. Dr. Edwards, the doctor that delivered Maria, was relieved when he saw her come out. He told Leah and Keith that she had Amniotic Band Syndrome, that he had seen it before, and that it was treatable.  The Dupuis' were flying high. Not only was their child alive, but the doctors knew what her condition was and were confident that something could be done about it.

     Maria was in the intensive care unit in an incubator for eight days after she was born. Before she could leave the hospital she had to see several specialists and have both her feet cast. Her family didn't know that within the next couple of years Maria would have eight surgeries, surpassing her age by three years.

     Maria's first surgery was done when she was six and a half months old.  In her first surgery, doctors removed one of her six toes on her left foot and lengthened her tendons. Since then, her other surgeries have been to: release some of the muscle tension in her hip, lengthen her femur, correct her feet, and to address the amniotic bands that were internal. Maria also has had a spinal fusion surgery.  In her most recent surgery, doctors put two rods on each side of her spine but not adjacent to it. It was performed in December, five months after her fifth birthday. 

     "She's always bounced back way sooner than they’ve thought [she would]," her mom said.

     Although her body is small, and has been through immense pain, her spirit remains strong.  She runs and plays with her siblings as if there is no such thing as Amniotic Band Syndrome. She laughs and giggles with her little sister Alicia on the couch with their uncle. When looking at pictures of when she was a baby with her mom she says, "That's gross" when she sees one of the bands that was wrapped around her at birth.

     "The hardest thing for me to live with is they can't fix everything," her father said. "You have to come to terms with that."

     Throughout her many struggles Maria continues to amaze her physicians. Her mom and dad's pride gleams on both their faces with how well she has done. Although they are sympathetic to her needs, they make it a point to treat her just the same as their other six children.

     Leah Dupuis said her job is to "get her through surgeries. To push her along, to not give up, to be the best she can." Her father says that there is no way they will ever give up.

     Her latest surgeon, Dr. Emans, calls her the "can do kid" and she most certainly is.