Baby Jaiden’s Survival Story – Mom needs advise

June 6th, 2013 by Lisa

My son Jaiden was born early at 29 weeks gestation at the Melbourne Royal Women’s Hospital. He had a great start to life only needing cpap for the first night and then went on to breathing on his own from the next day on. He was so small (890gms) but just perfect. He required full tpn for the first couple of days then went to milk feeds. He came off the tpn as his feeds increased and 3 weeks later he was on 19 ml per 2 hours and doing great. At 32 weeks we were transferred to a regional hospital (Ballarat Base) for Jaiden to see out his time to grow and get to term. He arrived at Ballarat showing signs of respiratory stress, bloods were taken but came back all clear. His condition was stable and there were no other signs he was sick. 4 days after arriving and within a few hours his vitals crashed and he was showing signs of having NEC – bowel loops full of air, distended belly, respiratory failure etc. Jaiden was rushed back to The Women’s hospital and hit with antibiotics, lines inserted everywhere and kept stable, things did not improved and he was shifted to The Royal Children’s Hospital. The series of events that followed were a living nightmare, my baby boy went from healthy to requiring abdominal surgery to remove bowel that had died due to NEC in a matter of 18 hours. Jaiden lost 15cm of the end of small intestine including IC Valve, his ascending colon and half the traverse colon in the first op and a illeostomy was bought out. He came out on oscillator ventilation and progressed quickly to standard full ventilation. He was left open with wound dressing covering the surgical site as there was more small intestine they were unsure about. 4 days later they went back in and removed a further 15cm of small intestine and a new illeostomy was bought out. Jaiden was closed up and on heavy sedation (modazolan), pain meds (morphine then fentanyl) and every other drug and medical requirement to keep him stable – blood transfusions, platelet transfusions, blood pressure meds, fluids etc etc. 2 weeks went by and he stayed “stably unwell” the docs called it, he just wasn’t getting over the ops, he now had full body sepsis and klebsiella infection. He was not responding to the normal mix of antibiotics and he developed abscess in his abdomen cavities. For the 3rd time the surgeons went in for a “wash out” and put in a drain. 4 days later there was still no improvement and op number 4 happened and this time Jaiden lost the other half of the traverse colon and all the descending colon due to abscesses on the colon sections. 2 drains were placed in the abdomen and new antibiotics were started which he seemed to respond to. On the Easter weekend he started to ooze pus from his incision and an ultrasound was done, they found more collections of fluid and abscesses in the abdomen. The surgeons did not want to go in again and instead unpicked a few stitches and let the pus ooze out of the incision site. He treatment was constant platelet transfusions, blood transfusions and antibiotics. Finally he started to win, the fluid collections reduced the abscesses started to clear up, time between transfusions became longer and he was getting better. They started to wean his sedation and pain meds and came off the ventilator 9 weeks after admission for NEC and he was put on high flow. At 10 weeks he was cleared of infection and a week later antibiotics stopped. Jaiden now has the battle of adapting to his new intestinal length. He hasn’t been able to absorb any milk so far and his stoma losses are high, he has been on trophic feeds of 1.5ml every hour to try to get his gut working. They have tried oral antibiotics for bacterial overgrowth with no success. Tomorrow they are going to start neocate to see if its an intolerance issue. I am scared for Jaiden’s future as I know the TPN causes liver disease and brittle bones and this is currently his only source of nutrition. I have not been able to get answers from the doctors if he will ever be able to drink milk or eventually eat normally or even how long he will stay in hospital, he cannot leave with an illeostomy as his losses are too high and surgeons say an early close will not help due to such little distal colon remaining, they have told me 6month minimum and longer if he’s going ok and not experiencing liver failure or repeated infection or sepsis. They say “time” will hopefully make things better. I haven’t been able to connect with anyone who has a child suffering the same intestinal loss as Jaiden to get any advise. He has 65cm small intestine, no IC Valve, and only the sigmoid colon and rectum remaining. Please if anyone has any advise I would be eternally grateful. What does the future hold for my beautiful baby boy :'(

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2 responses to “Baby Jaiden’s Survival Story – Mom needs advise”

  1. Vina Ferrer says:

    My baby Tristans condition is very Similar to yours. Every child is very individual so it’s hard to know for sure what the the future holds for your baby. but my baby has always had issues with loose stools. He was on TPN for 1 year. He’s partially gtube fed now. He’s a very happy baby and is slowly growing in height and weight. Feel free to contact me. My email is vina1010@gmail.com

  2. Laura says:

    Hi Lisa,

    I know exactly how you are feeling. I felt the same nearly 10 years ago. My beautiful daughter, Isabella was born at 24 weeks, developed NEC, had surgery and removed the top part of her small bowel including IC Valve and left with 55cm of small bowel intact. She also had an ileostomy. She was on TPN for nearly 2 1/2 years and the amount of Neocate varied over time which she wasn’t really tolerating. Her liver was failing and we were under close observation and a transplant was discussed.

    However, without going into full details of what happened over the next 2 1/2 years (I am happy to answer any questions that anyone has to ask) she finally managed to come off TPN, and was on an over night continuous feed of neocate through her MIC-KEY button.

    Isabella is a fit and healthy little girl who is just about to celebrate her 9th birthday and I’m pleased to say that she is tubeless, no ileostomy and eats absolutely everything!! Although we do have to limit the amount of dairy she has as it usually passes straight through her. Although she is smaller than her peers, she certainly makes up for it with her personality.

    I do understand how you are feeling & all I ever wanted to do was to talk with someone who has been through a simular experience. I am more than happy to give you my email address if you would like to ask any questions or anything. few.laura@gmail.com

    All the best for you and little Jaiden x

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