Baby Jaiden’s Survival Story – Mom needs help

July 29th, 2013 by Lisa

my son Jaiden was born early at 29weeks 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 19ml per 2 hours and doing great. At 32 weeks we were transfered 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 as he was very very sick and suffering renal failure and fighting for his life. It was constant blood transfusions, platelet transfusions, blood pressure meds, meds to make him pee,fluids to keep him hydrated 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 and still struggling with renal failure. He was not responding to the normal mix of antibiotics and treatment and he developed abscess in his abdominal 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 :'(

18 responses to “Baby Jaiden’s Survival Story – Mom needs help”

  1. Britt says:

    My twin boys were 32 weekers emergency-c they both had klebsiella infections and contracted NEC with pneumotosis. My big boy got better on antibiotics my little one ended up perforating we was on the oscillator, ephinephrene dopamine 3 strong antibiotics and all types of transfusions he lost 3/4ths of his small intestine (he has 21 centimeters left) it. Was the most terrifying experience of my life. My little guy currently has a jj-ostomy which isnt much to work with his stools look highlighter yellow and he practically dumps all his feeds…he is up to 7.5 ml / hr continuos he is corrected to two months and is 8 lbs ….it has been 3 and a half months since his bowel surgery we are very fortunate he made it and is thriving although hes dependent on tpn . When everything is reconnected he will have alot mor bowel surface area to absorb his feeds . We made friends with another family whos daughter lost 25cm and was dumping until they reconnected her she got to full feeds that same week… our children might be dealing with short gut but they say its really up to the baby theyve seen some with more do worse and less do better …we will be praying for you stay strong!

  2. Lisa says:

    Jaiden is now 5 months post operations and is still not absorbing. His losses have recently jumped to 45ml per kilo he is now 6kgs. His losses are worse now than 2 months ago and they have gone down in feeds to 12ml after getting to 16ml an hour. He also is starting to have a bug positive fluid balance, his nappies are not as heavy,a recent xray showed an enlarged area in his heart, his spleen is enlarged, and keeps getting rsv. He has not had 1 weeks where he has been well since getting nec. I just hope one day my boy will experience feeling normal.

  3. Clare says:

    Our daughter Gracie was born at 23+6 in 2010 and had NEC twice. The first at only a couple of weeks old and second time at 2 months. They took her to surgery, saw that the infection was from her stomach to her rectum with only a few small patches that were healthy. They closed her up and sent her back to the ward as there was nothing they could do. Her story from here is almost the same as your son’s. She was very very sick for weeks, kidneys failed, 100% oxygen, uncontrolable blood pressure, but eventually she overcame the infection just with the help if antibiotics and recovered. Her losses were huge. She was on almost total TPN and came down with every bug that was possible including RSV and multiple central line infections. I think that their immune systems are so low that unfortunately this is quite usual. We did see some other NEC babies who were rejoined and went home very quickly afterwards, and I think that this is the norm. However Geacue’s bowel had been so damaged that it wasn’t really working at all. To fast forward to May 2011, Gracie was 14 months old and we moved to the paed ward at our local hospital who have a gastro ward and a program that allows children home on TPN. It was amazing. They pushed her bowel, and it gradually started to work a bit better. I trained how to look after her on TPN at home, and after 17 months she came home! She is now 3.5 and exists on Peptimen jnr formula. She’s a good weight, does runny but ok poos and is attending a local pre school – something we never thought would happen. She is proof that a very sick bowel can start to work again. I’ll be thinking of you and will say a prayer for Jayden xx

  4. my blog says:

    If you’re one of those people who feel they don’t have time to eat breakfast, you may want to reconsider that excuse. This stress activates your immune system and a hyperactive immune system causes the release of the hormone cortisol.

  5. MJ says:

    I lost my grandson at 52 days old to NEC, he was premature (24 weeks, 1-lb 12-oz). The pain is heart breaking. My heart hurts so bad for all that have suffered this horrible prognosis. My daughters life has changed, the pain never ends for her.

  6. MJ says:

    What can I do to help my daughter?

  7. Lisa says:

    Hi MJ,

    I have no words that will ease your daughter’s pain. There were many times I thought I would lose Jaiden but thankfully he got through the repeated surgeries and infections. Jaiden is now 14 months and still fully TPN dependent, we are still on 50ml per kilo milk feeds, so progress is slow if not stagnant at the moment. Everyday I hope for progress, that his losses will come down and we can start weaning the TPN. My worry is for his future health, that he continues to tolerate the TPN, that his liver stays healthy and he doesn’t get a line infection. I don’t think you ever completely come to terms with the situation as its all so very unfair. I don’t know if your daughter talks about her pain but if she can find someone she can be 100% honest with, to be able to cry, to get angry, to scream, to blame, to express all her inner feelings to, or even write it down as a letter to her son, this may help. I hope she can get back to a life where she will still feel all those painful emotions but can live her life. There are no answers or reasons or person to blame that’s why NEC is such a cruel disease. Some are lucky and the babies heal and go on to live normal healthy lives, for some the battle continues everyday and hope is tested and the future is unknown, and some the battle is lost and there is nothing left but hurt and questions of why. They say time heals all wounds, this is very untrue but time may enable her to handle the pain in a way she can get back to her life, nothing is ever the same after NEC in many different ways .

  8. Mandy says:

    Lisa, would you email me? I see this hasn’t been posted on in a while now but we have twin girls, one had a severe case of NEC. She defied all odds and survived. She’s got surgery coming up soon. We know she needs a resection, they have to reconnect because it’s no longer connected. We’ll know more about the extent of the damage, and where, after the surgery. I’m pretty scared. I’d love to talk with you about things, it helps me to find someone who knows what’s happening to us because no one knows this pain and horror without going through it! Thank you, and best wishes to you!

  9. Lisa says:

    Hi Mandy, I’m more than happy to talk about anything. Jaiden is still not connected and it will still be a long time before that happens for us. Do you know which parts of the bowel were affected and howmuch length your little girl has lost so far? This can make some difference to longer term outcomes, but the doctors may have already said each case is unique and time will tell. Which isn’t very helpful I know. I hope all goes well with the surgery and dont hesitate to contact me.

  10. Mandy says:

    Hi! They have not said for sure how much she lost. The initial prognosis was not good. They said a total loss, inconsistent with survival. But she has since had consistent bowel sounds and shown signs that that is not the case, so they aren’t quite as pessimistic. She is supposed to have surgery this week, so we should know more after that.

  11. Mandy says:

    She had her surgery yesterday. They saved 30 to 40 cm of bowel. She lost her colon but her ileum is ok. She’s got an ostomy and they’ll reverse it in 6 weeks and reconnect her and put in a G tube and central line. The doctor said she’s a miracle, he expected worse. She’s now considered a short bowel baby.

  12. Chrissi says:

    I just found this post so my comments may have already been repeated, but I had boy/girl fraternal twins conceived completely naturally. Unfortunately at 32 weeks, we lost our little boy and delivered our daughter via emergency C-Section. She Weighted 4lbs 1oz. She was whisked away to the NICU and stayed there for more than 6 weeks after being diagnosed with NEC. She was very touch and go for a long time. With the loss of one baby, the shock of an early delivery, and the other in the NICU, I don’t think my husband and I processed how serious NEC is. That was 2 years ago. My daughter is completely healthy with no after effects. Looking at her now you would never know she was born so early or had so many complications. Please do not lose hope. NEC is serious, but as my daughter is proof, children that have can go on to have normal happy lives.

  13. Alex says:

    Hi, just found this concersation via google & boy am I happy I did. My name is alex, 22 years old, with a precious baby boy born at 31 weeks, 3lbs 8oz & 17in long. He was diagnosed prenatally with Down’s syndrome as well as a chd. After he was born he seemed to be doing amazing, almost on full feeds (by ng tube) & on his way to start learning to feed by mouth when at a month of age was diagnosed with NEC. It came out of nowhere. It seemed just 6 hours before I was holding a perfectly healthy baby boy (semi perfectly healthy, not involving his chd, but his heart was doing well enough to prolong surgery until 6mo of age) then all of a sudden I was being told the chances of him living were unlikely. Greyson underwent emergent surgery to in hopes save his life. Surgeons warned us even performing the op was putting him at risk & they weren’t sure of he would make it out & if he did they didn’t think he would make it through the night. During surgery they removed 51 cm of small intestine & found other “questionable” areas but decided to leave them to in hopes heal with antibiotics. Greyson defeated all odds against him & made it through the next 48 hours on full oxygen, blood pressure medications, pain meds, meds to make him pee off fluids, more medications than I’d ever seen. After two weeks he was able to be taken off the ventilator, he started pooping out of his ostemy & they were going to start to try small feeds again. After less than 24 hours they stopped feeds because all the food he was getting was not being digested & was having residuals of the full amount he was given. He stopped pooping completely which made them think there might be a blockage somewhere. They did an upper GI and barium enema where they found two strictures. They scheduled another surgery to remove strictures & hopefully do an ostemy take down to reattach everything. We sent Greyson off & the surgeon came back with news we never expected. They found a lot more dead intestine and were unable to reattach. The surgeon said the amount he has left over if it’s able to stay healthy is such a small amount that if he survives to be able to try feeds again he will have “short gut syndrome” & have an issue with dumping. He said he will more than likely become tpn dependent & will lead to liver failure. He doesn’t seem very optimistic for my sweet boy which is heartbreaking to me & makes me feel as if there is nothing to do but sit here to watch my son get sicker & sicker. I cannot even fathom thinking of the future of my son isn’t in it. I feel like no one understand what I am going through & would love to talk to one of you, all of you, really anyone who understands what I’m going through right now. I don’t want to give up hope as I know Greyson has already proved to us he is nothing but a fighter, but it’s hard to stay positive when im being told so many negative things at this time.

  14. Mary Jo says:

    My grandson Luiz (we called him Rocky, he was such a fighter). Rocky was born at 24 weeks, 1-lb 12-oz. We were told due to premature birth he had bleeding in his is brain, My daughter and husband excepted the fact that their child would be mentally challenged and have to live in a wheel chair (CP). Rocky kept fighting for 50 days, on day 51 he developed NEC, after two surgery’s in 3 days (removed 60 percent), It was time to let him go. My daughter and her husband gave every opportunity for supporting this beautiful child, but the time came to decide on his quality of life (which doctors told us, he would not have lasted another couple of days). If their is hope for your beautiful child without pain and suffering…. hold on, if not…KNOW YOUR NOT ALONE…

  15. Mandy says:

    Hi Alex! Do you have an email address I can contact you at? I have a great, and positive, story about my sweet Sadie that may help you feel better!

  16. Alex says:

    My personal email is alex_isett@yahoo.com

    Mary Jo: my heart is with your family. I, just like any parent don’t want to watch my sweet boy go through any more suffering than he already has. I’m just not ready to give up the fight. As long as he’s willing to fight I’ll be right with him fighting. I find it hard to stay positive at a time like this but I feel being negative is going to make my son become negative when right now all his only choice is to fight. I need to be here for my son & let him know we other way im never going to not support him. No parent wants to have to let go of their child and my heart is so heavy for your daughter. Heaven gained a special little angel.

  17. Nikita says:

    Interesting. The bulk of my experience has been with the New Zealand pattens systems, which shares it’s roots with, and has much in common with the UK system. In New Zealand, amendments were always allowable at the discretion of the court. I wasn’t involved in very much litiagation, but the impression I got was that there was no disadvantage to waiting until proceedings had commenced to apply to amend, and it was in some ways advantageous, as it forced the other side to prove their case for invalidity. With regard to the ‘wholly invalid’ point, we were always taught that if one claim (i.e. the main independent claim in question) was found invalid, then the whole patent was considered invalid. The subsidiary claims and any other independent claims wouldn’t necesarily have been considered at that point. Validity could be re-established by suitable amendments (with the permision of the court).

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