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Justin's Story
"Justin has been fighting for his life from conception..."
During a routine ultrasound appointment I was told Justin wasn’t growing. The blood flow to the placenta had stopped and prevented him from growing. There wasn’t much time that passed that Justin went into distress in the womb his heart rate was up and the fluid surrounding him was decreasing.
The doctors wanted to wait and give him as much time in the womb as possible, especially since he was so tiny. On April 10, 2008, at 31 weeks the doctors decided it is time for delivery. Justin’s birth weight was 1lb 14oz and begins his life, his journey in the NICU.
In the NICU Justin is in an incubator with shades on and a blue light receiving formula by NG tube, a nasal tube that goes down into his stomach. Not taking a bottle just yet because he is so small that sucking would zap his strength.
Justin is soon after birth diagnosed with CMV a virus that is passed to the child in gestation. CMV is carried in children and can cause birth defects. CMV attacks the eyes, hearing and other developments. Infectious disease in brought in the assess him and work on getting him better. Now, on medication called gancylovir- a medicine that is as strong chemotherapy to clear up the CMV for 8 months.
At two weeks old Justin must have a blood transfusion and is transported to Children’s Hospital to see the surgeons. He is now swollen from head to toes and placed on ventilator called an oscillator; a high frequency ventilator that supports the lungs with faster breathes and shakes. He had swollen so bad that his organs had no room in his body and is in Critical Condition. The doctors say he has NEC -Necrotizing Enter colitis and they would first have to operate and remove the intestines from the body to be able to let the swelling go down and that would save as much intestine as possible. He is so tiny now 2 lbs, how can you operate on a baby so small the additional weight is the swelling. When Justin comes of out surgery his intestines are now in a cylo- a bag for the intestines.
Justin would remain in this condition until the swelling subsided and then the surgeons would place the intestines back in his tiny body and close him up. Justin would go on to have a series of surgeries from the insertion of a G-tube in his abdomen for feeds and a broviac for IV medications. The broviac site would be changed several times do to infection.
Hospitalized for 7 months before he could come home for the first time. He would than go back and forth between The Children’s Home and Children’s Hospital, then his liver started to go bad and turned completely yellow the TPN was now hitting the liver hard. They believed that he wouldn’t live pass a year with that liver. He was put on the transplant list for a small bowel, pancreas, and liver. The liver later healed and he kept fighting with a smile on his face.
Justin is now 2 years old and has had 12 surgeries to sustain his life. He receives a series of medications twice a day and feeds for twelve hours a day via G-tube. Still on TPN for twelve hours a day Justin’s and his liver continues to fight.
Weekly Justin receives occupational and physical therapy along with visits from a developmentalist to help him to live a close to normal life as well as try to bring him on level with kids his age.
He is still on the transplant list for a small bowel but in the event TPN affects his liver again he will be relisted for the trio; a small bowel, pancreas, and liver.
Justin is a fun loving child whose smile can light a room and his resilience his amazing.
- Shared by his mother, Laygeria