NEC - Tysen

Three years ago, we began our journey as parents to a child who went to heaven and a child who stayed here on earth to fight for his life against a rare disease. It has been the toughest thing we have ever had to do. This is our story . . .

I remember February 10, 2011 like it was yesterday. I was nearly 31 weeks pregnant with two perfect, healthy identical twin boys: Kaysen Preston and Tysen Lucas. The events that happened that day and the months afterwards constantly replay in my mind. Because I was pregnant with identical twins I was monitored closely with weekly ultrasounds. On February 10th, I went in for a routine ultrasound. Both babies had been rambunctiously moving around all morning, so as I lay there on the ultrasound table, I was thinking about where I would be eating lunch and had no reservations about the appointment. Even when the ultrasound technician left the room and came back with the doctor, I thought nothing of it. Thirty seconds later, my safe, happy, carefree world was turned upside down. I will never forget the words that came out of the doctor’s mouth: “I’m sorry, but Baby A has no heartbeat”. I was so confused. I had JUST felt both of them moving. What did he mean he couldn’t find a heartbeat?! He went on to tell us that Baby B’s heart rate was dropping drastically because of the death of his twin brother. He had to be delivered immediately. Twenty minutes later both of our precious babies were delivered via emergency c-section. Kaysen Preston, our angel, weighed 3 lbs 1 oz and had passed away from getting tangled in his own umbilical cord. Our surviving twin, Tysen Lucas, weighed 2 lbs 14 oz and was taken to the NICU. I didn’t get to hear that first cry. I don’t remember much of the next 5 days. I don’t even remember meeting our sweet angel, Kaysen, for the first time.

An otherwise healthy premature baby, Tysen became very sick when he was 15 days old. His premature birth resulted in him getting necrotizing enterocolitis (NEC), an intestinal illness which causes healthy bowel tissue to die. After two surgeries to remove the dead bowel, Tysen was left with only 10% of his intestines and now has what is called Short Bowel Syndrome. Short Bowel Syndrome is a condition in which nutrients are not properly absorbed because a large portion of the intestine is missing or has been surgically removed. Seven long months in the NICU and two abdominal surgeries, one heart surgery, a central line placement surgery, twenty-eight blood transfusions, and countless procedures later, Tysen came home for the first time with an ostomy, a central IV line, and a feeding tube. Although he would go on to spend another 4 months in the hospital and have several more surgeries, his health eventually stabilized. Tysen has progressed leaps and bounds since his original prognosis. We were given little hope for his survival, but Tysen has beaten the odds. He was able to have his bowels reconnected in September 2012, so he no longer has an ostomy. His bowels have been rehabilitated enough to wean him completely off IV nutrition, which means his bowels absorb all the fluids, nutrients, and vitamins his body needs to function on its own with no assistance; thus he no longer has a central IV line. He will have his feeding tube for a while to come as his bowels continue to adapt, but he does drink and eat by mouth throughout the day.

Tysen is part of the Intestinal Rehabilitation Program at Children’s Mercy Hospital in Kansas City, as well as Cincinnati Children’s in Cincinnati, Ohio. These programs help “train” the remaining bowel to pick up the functions of the missing bowel, which is an ongoing, long-term process. Because Tysen is missing 90% of his bowels, staying hydrated, absorbing vitamins and nutrients, and simply growing are huge accomplishments for him. There is no cure for Short Bowel Syndrome. This is a condition he will live with for the rest of his life.

Tysen has many scars to tell his story, but regardless, he always has a smile on his face. He takes things in stride and very little slows him down. He is extremely sociable and outgoing and loves showing off for people. He is the light of our lives and we can’t imagine life without him. We hold Tysen in our arms and Kaysen in our hearts. Although Kaysen is not here with us, we know that he has guided and continues to guide his twin brother, as well as his mom and dad, through all of these tribulations.

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