Comments on: FAQ – Necrotizing Enterocolitis http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/ Fri, 12 Mar 2010 14:32:44 -0500 http://wordpress.org/?v=2.8.4 hourly 1 By: Kellie http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-465793 Kellie Sun, 28 Feb 2010 19:08:11 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-465793 I am very sorry for anyone who has lost there child to this unpredictable disease called NEC, your little angels are with God now. I need to tell someone my story so here it is: On February 1, 2010 at 28 weeks i deliver my twin boys, they were very small weighing in at 1 lbs 4 oz and 2 lbs 14 oz. Three weeks after they were born around February 20th one of my boys Kyle the bigger one delvoped NEC. the doctors said it was a serious disease but my son seemed unfazed by it, he didn't have a bloated stomach, didn't seem like he was in pain or anything like that but his x-ray showed he had this disease. the doctors stopped his feeding and started him on a 10-day course antibiotic. he was fine after about three days, doing great, x-rays looked great. Then about a week later on February 26th my other son Cory the smaller of the two developed the same disease NEC but it was rapidly getting worse, they thought it might be NEC around 10pm that night, diagnosed him with NEC at 12am, they started antibiotics around 5am, they called us at 6am the next morning on February 27th to tell us to come to the hospital becasue he was not doing good, when we got there they told us it was NEC, we thought that's all he has; he'll be fine our other son Kyle just had this infection. he looked really bad his stomach was purple, he was not that active, he really looked sick. At 9am they put a tube in my baby's stomach to help drain some of the fluid out of his intestines, he tolerated the procedure well. At 11:15am my son's heart rate dropped and they started CPR. the doctor said his heart was not pumping on it's own. We were in the room the whole time they were working on him, my son was passing away right in front of me, i didn't know what to do, all i could do was pray, i prayed to God to keep my baby safe and strong and if he thought that was with him then i was ok with that, i prayed to God to not let my baby suffer. My son, Cory looked like he was in so sick but i thought he could make it through this, he was so strong, he overcame so many odds (being very small at birth, overcoming numerous infections). he was my little fighter but this infection NEC was to painful for him to bear. It was so devastating, my son was growing, taking his feeding well and beating all the odds. My son passed away in my arms, his heart was not beating regularly but he was still so warm in my arms, it felt so good to hold him,it was the first time i had ever held him (unable to becasue he was on an ocillator-ventilator). i held him until he became cold and hours after that, the love i have for my son is undescribeable but i have to go on, i have to be strong for my other children, his twin brother and his older brother and two older sister. It's so hard to keep going on without my son, Cory. He will always be my little fighting angel and i will never forget him and always love him. I just don't understand how one of my boys could get through NEC with a breeze, like it bearing fazed him and my other son could not. i could see the difference in how it affected them both, one didn't look sick at all and the other looked severely critical. I am very sorry for anyone who has lost there child to this unpredictable disease called NEC, your little angels are with God now.

I need to tell someone my story so here it is:
On February 1, 2010 at 28 weeks i deliver my twin boys, they were very small weighing in at 1 lbs 4 oz and 2 lbs 14 oz. Three weeks after they were born around February 20th one of my boys Kyle the bigger one delvoped NEC. the doctors said it was a serious disease but my son seemed unfazed by it, he didn’t have a bloated stomach, didn’t seem like he was in pain or anything like that but his x-ray showed he had this disease. the doctors stopped his feeding and started him on a 10-day course antibiotic. he was fine after about three days, doing great, x-rays looked great. Then about a week later on February 26th my other son Cory the smaller of the two developed the same disease NEC but it was rapidly getting worse, they thought it might be NEC around 10pm that night, diagnosed him with NEC at 12am, they started antibiotics around 5am, they called us at 6am the next morning on February 27th to tell us to come to the hospital becasue he was not doing good, when we got there they told us it was NEC, we thought that’s all he has; he’ll be fine our other son Kyle just had this infection. he looked really bad his stomach was purple, he was not that active, he really looked sick. At 9am they put a tube in my baby’s stomach to help drain some of the fluid out of his intestines, he tolerated the procedure well. At 11:15am my son’s heart rate dropped and they started CPR. the doctor said his heart was not pumping on it’s own. We were in the room the whole time they were working on him, my son was passing away right in front of me, i didn’t know what to do, all i could do was pray, i prayed to God to keep my baby safe and strong and if he thought that was with him then i was ok with that, i prayed to God to not let my baby suffer. My son, Cory looked like he was in so sick but i thought he could make it through this, he was so strong, he overcame so many odds (being very small at birth, overcoming numerous infections). he was my little fighter but this infection NEC was to painful for him to bear. It was so devastating, my son was growing, taking his feeding well and beating all the odds. My son passed away in my arms, his heart was not beating regularly but he was still so warm in my arms, it felt so good to hold him,it was the first time i had ever held him (unable to becasue he was on an ocillator-ventilator). i held him until he became cold and hours after that, the love i have for my son is undescribeable but i have to go on, i have to be strong for my other children, his twin brother and his older brother and two older sister. It’s so hard to keep going on without my son, Cory. He will always be my little fighting angel and i will never forget him and always love him.

I just don’t understand how one of my boys could get through NEC with a breeze, like it bearing fazed him and my other son could not. i could see the difference in how it affected them both, one didn’t look sick at all and the other looked severely critical.

]]> By: Colleen http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-455739 Colleen Mon, 21 Sep 2009 02:13:21 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-455739 my son was born at 32 weeks. i had a velamentous cord insertion of the umbilical cord and there were problems with compression during birth, as well he was breach and i it was a vag birth so that might have contributed to him having NEC after a few weeks of seeming to do well. he's been home since shortly before his due date, but has ongoing intestinal difficulties. he has chronic pain, particularly with gas and bowel movements. he's 8 months old now (6 corrected), and has been on solids for a bit more than a month. since he started he's been constipated and taking stool softeners. he is breastfed, and i limit my diet. we just learned he has a milk allergy so that's the current thing i eliminated from my diet although for a while i followed dr. sear's colic diet so i eliminated A LOT of things. i'm so worried about my little boy. when he's good he's really good, but he seems to have daily bouts of extreme pain. we've been back in the hospital once with strange lethargy. they tell me he just has an immature bowel, and it should improve. we've also just seen an immunologist as his blood immunoglobulin IgG was very low. i am quite certain there is something not right, but the doctors can't seem to figure anything out. i wish i could do something about his pain, and i have a feeling that he's much more sick than they think, some of the stories here have really freaked me out. although we are being followed by a pediatrician, family doctor, and now immunologist, i'm considering taking him to the Hospital for Sick Children in toronto just to be sure he gets a comprehensive workup from the experts. my son was born at 32 weeks. i had a velamentous cord insertion of the umbilical cord and there were problems with compression during birth, as well he was breach and i it was a vag birth so that might have contributed to him having NEC after a few weeks of seeming to do well. he’s been home since shortly before his due date, but has ongoing intestinal difficulties. he has chronic pain, particularly with gas and bowel movements. he’s 8 months old now (6 corrected), and has been on solids for a bit more than a month. since he started he’s been constipated and taking stool softeners. he is breastfed, and i limit my diet. we just learned he has a milk allergy so that’s the current thing i eliminated from my diet although for a while i followed dr. sear’s colic diet so i eliminated A LOT of things. i’m so worried about my little boy. when he’s good he’s really good, but he seems to have daily bouts of extreme pain. we’ve been back in the hospital once with strange lethargy. they tell me he just has an immature bowel, and it should improve. we’ve also just seen an immunologist as his blood immunoglobulin IgG was very low. i am quite certain there is something not right, but the doctors can’t seem to figure anything out. i wish i could do something about his pain, and i have a feeling that he’s much more sick than they think, some of the stories here have really freaked me out. although we are being followed by a pediatrician, family doctor, and now immunologist, i’m considering taking him to the Hospital for Sick Children in toronto just to be sure he gets a comprehensive workup from the experts.

]]> By: Eloise http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-450109 Eloise Fri, 14 Aug 2009 15:49:34 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-450109 Hi eddie, I'm sorry for your loss. How davastating it is to loose a child. As a parent we have so many hopes and dreams for our children and they are snatched away from us. I had posted here over a year ago. My son was in chronic pain after NEC repair, he had lactose allergy, and that was part of the problem, but he still didn't get better. He passed away at 15 months. I now realize that, although NEC contributed to some of his pain, he had other medical issues that contributed to his lack of development and quality of life. I am so sorry for everyones' loss. I am so sorry my son is gone, but I have to remind myself that he is in a happy place and that I will meet with him someday. My six year old says that we have a guardian angel now. I believe him. Hi eddie, I’m sorry for your loss. How davastating it is to loose a child. As a parent we have so many hopes and dreams for our children and they are snatched away from us. I had posted here over a year ago. My son was in chronic pain after NEC repair, he had lactose allergy, and that was part of the problem, but he still didn’t get better. He passed away at 15 months. I now realize that, although NEC contributed to some of his pain, he had other medical issues that contributed to his lack of development and quality of life. I am so sorry for everyones’ loss. I am so sorry my son is gone, but I have to remind myself that he is in a happy place and that I will meet with him someday. My six year old says that we have a guardian angel now. I believe him.

]]> By: eddie http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-448057 eddie Thu, 30 Jul 2009 09:09:57 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-448057 on june 30 2009 i lost my lil angel to nec.she was diagnosed on that same day at 3pm.and the doctores decided they would wait til 8p, to do another xray.she passed at 6 opm.my baby had a perferated intestine .at this point the doctores didnt even perform any tyoe of surgeries to try to save her.in my mind it seemed like they were moving to slow.and it is real strange that they didnt diagnose days before the 30th. on june 30 2009 i lost my lil angel to nec.she was diagnosed on that same day at 3pm.and the doctores decided they would wait til 8p, to do another xray.she passed at 6 opm.my baby had a perferated intestine .at this point the doctores didnt even perform any tyoe of surgeries to try to save her.in my mind it seemed like they were moving to slow.and it is real strange that they didnt diagnose days before the 30th.

]]> By: Michelle http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-447250 Michelle Sat, 25 Jul 2009 06:19:24 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-447250 I just wanted to do a follow up on my story from the 5th of March. My little girl Jayde was diagnosed with NEC when she was 3 weeks old and now my princess is 6 months old. Jayde is still eating Pepti junior (special milk from pharmacy) and is to remain lactose intolerant as her specialists in Darwin, Australia think that lactose may be a contributing factor to a possible relapse. Jayde is like a normal 6 month old, trying to crawl and now eating solids. We are very blessed that thus far we have our little angel fighting fit! I just wanted to share the next chapter in my story as Jayde Is proof that NEC is not always a death sentence even thou because Jayde was full term plus the doctors didnt think to test for NEC. Again I am so sorry for your loss!! xx I just wanted to do a follow up on my story from the 5th of March.
My little girl Jayde was diagnosed with NEC when she was 3 weeks old and now my princess is 6 months old.
Jayde is still eating Pepti junior (special milk from pharmacy) and is to remain lactose intolerant as her specialists in Darwin, Australia think that lactose may be a contributing factor to a possible relapse.
Jayde is like a normal 6 month old, trying to crawl and now eating solids.
We are very blessed that thus far we have our little angel fighting fit!
I just wanted to share the next chapter in my story as Jayde Is proof that NEC is not always a death sentence even thou because Jayde was full term plus the doctors didnt think to test for NEC.
Again I am so sorry for your loss!!
xx

]]> By: Michelle http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-400927 Michelle Fri, 06 Mar 2009 04:45:58 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-400927 Hi all, I just wanted to send my heartfelt condolences to you all that have lost your precious little angels from this horrible horrible disease. I unfortunately am still fighting this battle with the birth of my beautiful daughter 7 weeks ago, I was actually induced with my little angel "Jayde" and she was born 8 days past her due date. We bought her home and started our life as a family together, almost into her third week of life Jayde began vomiting her feeds with alot of force, I was told it was reflux and to treat her accordingly. a week past and Jayde continued vomiting despite my changes to her environment and milk (formula baby) One night Jayde would not keep any of her feeds down and would take an hour to consume one bottle, her temperature had reached 38.4 degrees so I took her to the hospital. A lumbar puncture, xrays and ultrasounds later (after force feeding her in the end by mouth and Nasogastric tube) my angel was diagnosed with NEC. Triple antibiotics were started and nil by mouth was enforced after 10 days of this treatment, feeds were started at 1ml every two hours, we were discharged from hospital without a follow up xray ?? and she is now on pepti junior milk, Jayde is still since day of discharge having low grade fevers and has a soft but distended tummy. Does anyone know weather I may be looking at a relapse with my little one or is this just the effects of the strain she has been under? Thank you!! xxx Hi all,
I just wanted to send my heartfelt condolences to you all that have lost your precious little angels from this horrible horrible disease.
I unfortunately am still fighting this battle with the birth of my beautiful daughter 7 weeks ago, I was actually induced with my little angel “Jayde” and she was born 8 days past her due date. We bought her home and started our life as a family together, almost into her third week of life Jayde began vomiting her feeds with alot of force, I was told it was reflux and to treat her accordingly. a week past and Jayde continued vomiting despite my changes to her environment and milk (formula baby) One night Jayde would not keep any of her feeds down and would take an hour to consume one bottle, her temperature had reached 38.4 degrees so I took her to the hospital.
A lumbar puncture, xrays and ultrasounds later (after force feeding her in the end by mouth and Nasogastric tube) my angel was diagnosed with NEC. Triple antibiotics were started and nil by mouth was enforced after 10 days of this treatment, feeds were started at 1ml every two hours, we were discharged from hospital without a follow up xray ?? and she is now on pepti junior milk, Jayde is still since day of discharge having low grade fevers and has a soft but distended tummy. Does anyone know weather I may be looking at a relapse with my little one or is this just the effects of the strain she has been under? Thank you!! xxx

]]> By: Kay http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-378279 Kay Wed, 04 Feb 2009 12:58:48 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-378279 Hi just wanted to share my story with you. Also I would like to send my condolences to those of you that have had to suffer losses dut to the devestating disease - NEC. On the 7th april 2008 I gave birth to my 3rd child, He was only a week early, was footling breech and had interuterine growth retardation, he weighed 2.2kg. Not long after the fiasco of having to deliver him naturally while in a bad breech position he was taken from me to be put on nicu. I was told he was just cold and couldnt hold a temperature for himself just because he was very small. He had been in nicu for a few days when the doctors said they thought he had some kind of hypoglycemia problem and inserted an umbilical catherter. On day 16 my sons stomach was VERY distended, and veiny of appearance. All this time the doctors were force feeding him through a tube more and more volumes of milk! On day 18 it was evident that my son had a SEVERE case of Nec and was sent to another local hospital with facilities to deal with the nec. On day 19 My son had surgery and lost 200cm of his bowel. He was left with approx 50cm. He was taken off all milk feed and placed on TPN, which dramtically affected hi liver leaving him severly jaundiced. I begged and pleaded for them to take him off the TPN as i had seen some of the aftermaths it had on other kids leaving them with chronic liver diease. Eventually they heard my plea and removed him from the tpn - during the time he was on it he had also encountered long line sepsis multiple times. My son is now left with short bowel syndrome, and a milk allergy. He came home from hospital at 2 and a half months old and is now coming up for 10 months old, he is smaller than the average baby his age but he has a healthy appetite and poops regular. I am amazed at how well he has done - and i owe his little life to those fantastic surgeons and nurses. However I am of the belief that his NEC was caused by a poorly fitted umbilical catherter in the first hospital he was in..... Can anyone tell me if this is a possibilty? In my opinion there was no need for him to have the umbilical catherter fitted in the first place as he DID NEVER have any hypoglycemia problems. I also believe him to have been mis diagnosed on several occasions in ths first hospital..... Am i allowed to have access to his notes regarding this? I send my wishes and prayers to anyone that has had to deal with this devestating illness. xxx P.S i am in the UK Hi just wanted to share my story with you. Also I would like to send my condolences to those of you that have had to suffer losses dut to the devestating disease – NEC.

On the 7th april 2008 I gave birth to my 3rd child, He was only a week early, was footling breech and had interuterine growth retardation, he weighed 2.2kg. Not long after the fiasco of having to deliver him naturally while in a bad breech position he was taken from me to be put on nicu. I was told he was just cold and couldnt hold a temperature for himself just because he was very small. He had been in nicu for a few days when the doctors said they thought he had some kind of hypoglycemia problem and inserted an umbilical catherter. On day 16 my sons stomach was VERY distended, and veiny of appearance. All this time the doctors were force feeding him through a tube more and more volumes of milk! On day 18 it was evident that my son had a SEVERE case of Nec and was sent to another local hospital with facilities to deal with the nec. On day 19 My son had surgery and lost 200cm of his bowel. He was left with approx 50cm. He was taken off all milk feed and placed on TPN, which dramtically affected hi liver leaving him severly jaundiced. I begged and pleaded for them to take him off the TPN as i had seen some of the aftermaths it had on other kids leaving them with chronic liver diease. Eventually they heard my plea and removed him from the tpn – during the time he was on it he had also encountered long line sepsis multiple times. My son is now left with short bowel syndrome, and a milk allergy. He came home from hospital at 2 and a half months old and is now coming up for 10 months old, he is smaller than the average baby his age but he has a healthy appetite and poops regular. I am amazed at how well he has done – and i owe his little life to those fantastic surgeons and nurses. However I am of the belief that his NEC was caused by a poorly fitted umbilical catherter in the first hospital he was in….. Can anyone tell me if this is a possibilty? In my opinion there was no need for him to have the umbilical catherter fitted in the first place as he DID NEVER have any hypoglycemia problems. I also believe him to have been mis diagnosed on several occasions in ths first hospital….. Am i allowed to have access to his notes regarding this? I send my wishes and prayers to anyone that has had to deal with this devestating illness.
xxx
P.S i am in the UK

]]> By: Eloise http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-241643 Eloise Mon, 16 Jun 2008 00:38:17 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-241643 Hi Bette how are you? Just waned to share my story with you and all. My 30 week preemie developed NEC 1 month afer birth. He had 2 surgeries to see if his bowls could be saved, after the third surgery he had an ostomy placed, that was taken down 2 months later. He now lives with chronic pain and is constantly crying. He has mal-absorbtion problems and is under weight. The infection caused neurological problems and he is delayed. I don't know what his future would be like. I asked the doctors not to intervene if his quality of life would be compromised, they assured me that he would be fine. I feel betrayed, my son is in constant pain, he cannot sleep, I cannot comfort him, he has not grown much, at 5 months he looks and acts like a skinny newborn. A person said "he is better than dead." I was fine with letting go. My son would be in a happy place; is it worth to torture a child because our love for him wants him here? I love him so much and his pain is my pain, I cannot find resolution yet, I am in a "wait and see" game. Will his life improve? what about the neurological damage? I cannot find answers or survivors to share their stories with me. I feel alone and burdened. I cry everyday and am seeking therapy. I'm sorry for your loss, I hope you don't find insult in what I say, but at least you can find resolution and move on. I am in limbo and don't know when and if the pain will stop. My son's physical pain and the emotional pain of seeing the one I love sruggle through life. Are there any survivors? Please share your experience with me, will the chronic pain stop? don't worry about giving me bad news, at least I can deal with what I know, its not knowing that makes me anxious. Thank you. Hi Bette how are you? Just waned to share my story with you and all. My 30 week preemie developed NEC 1 month afer birth. He had 2 surgeries to see if his bowls could be saved, after the third surgery he had an ostomy placed, that was taken down 2 months later. He now lives with chronic pain and is constantly crying. He has mal-absorbtion problems and is under weight. The infection caused neurological problems and he is delayed. I don’t know what his future would be like. I asked the doctors not to intervene if his quality of life would be compromised, they assured me that he would be fine. I feel betrayed, my son is in constant pain, he cannot sleep, I cannot comfort him, he has not grown much, at 5 months he looks and acts like a skinny newborn. A person said “he is better than dead.” I was fine with letting go. My son would be in a happy place; is it worth to torture a child because our love for him wants him here? I love him so much and his pain is my pain, I cannot find resolution yet, I am in a “wait and see” game. Will his life improve? what about the neurological damage? I cannot find answers or survivors to share their stories with me. I feel alone and burdened. I cry everyday and am seeking therapy. I’m sorry for your loss, I hope you don’t find insult in what I say, but at least you can find resolution and move on. I am in limbo and don’t know when and if the pain will stop. My son’s physical pain and the emotional pain of seeing the one I love sruggle through life. Are there any survivors? Please share your experience with me, will the chronic pain stop? don’t worry about giving me bad news, at least I can deal with what I know, its not knowing that makes me anxious. Thank you.

]]> By: Bette http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-118064 Bette Wed, 31 Oct 2007 19:15:43 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-118064 I HAD A SON IN JULY 9 WEEKS EARLY AND ALSO DEVELOPED NEC. I WAS RUSHED TO THE HOSPITAL AFTER HAVING MIGRAINES AND PAINS IN CHEST , AND SOMETHING DIDN'T FEEL RIGHT. THEY TOOK MY BLOOD PRESSURE AND IT WAS IN THE 200'S IMMEDIATELY I WAS HOOK UP TO EKG MACHINES AND PUT ON MAGNESIUM. AFTER SEVERAL HRS, MY DOCTORS TOLD ME SHE WAS SCHEDULING A C-SECTION @ 7:30 PM THAT NIGHT. SO OUR SON WAS IN THE NICU FOR 28 DAYS .BORN @ 2.5LBS VERY SMALL AND FIESTY AND THINGS WERE GOOD . HE WAS BREASTFEEDING AND GAINING WEIGHT AND VERY ALERT... HE WAS PERFECT. MY HUSBAND AND I WENT TO DISCHARGE CLASSES AND EVERYTHING. THE HOSPITAL SAID IN 2 WEEKS HE COULD COME HOME ON A MONITOR IF HIS BRADY EPISODES WERE SLOWING DOWN. BUT MY HUSBAND WENT OUT OF TOWN AND I DID MY USUAL DAY ROUTINE TO THE HOSPITAL AND SEE OUR SON . AND THEN A NURSE SAID YOUR SON IS SICK AND I HAD NO IDEA WHAT WAS GOING ON . HE TURNED REAL WHITE HIS STOMACH WAS HARD AND PURPLE . IT WAS CRAZY MY HUSBAND RUSHED HOME FROM A BUSINESS TRIP , BUT THIS ALL HAPPENED IN A MATTER OF HRS! OUR LIFE COMPLETELY TURNED UPSIDE DOWN , SO HE WAS FLOWEN TO CHILDRENS HOSPITAL IN DC AND HAD EMERGENCY SURGERY LATE THAT NIGHT (3 HRS) . A LARGE PORTION OF HIS INTESTINE WAS BAD AND THE DOCTORS TRIED TO SAVE THE REST . SO HE WAS ON ANTIBIOTICS AND WERE GOING TO GIVE HIM ANOTHER CHANCE. SO THEY DID ANOTHER SURGERY THE FOLLOWING DAY, WHEN THEY WENT BACK IN IT WAS WORSE AND THERE WAS NOTHING THEY COULD DO . I CAN'T SAY ENOUGH ABOUT CHILDRENS HOSPITAL THEY GREAT AND GAVE US 2 CHANCES TO SAVE OUR SON'S LIVE . AFTER HIS SURGERY IN THE MORNING THE STAFF CAME BACK AND TOLD OUR FAMILY, THERE WAS NOTHING ELSE THEY COULD DO ETC. AND MY HUSBAND HELD HIM TILL HE TOOK HIS LAST BREATHE AUG 28 TH 11:15 AM, AT 28 DAYS OLD. BORN ON JULY 30TH - FUNERAL SERVICES ON AUGUST 30TH 2007. I DO NOT KNOW HOW I'M GOING TO GET THROUGH THIS? PLEASE HELP. I HAD A SON IN JULY 9 WEEKS EARLY AND ALSO DEVELOPED NEC. I WAS RUSHED TO THE HOSPITAL AFTER HAVING MIGRAINES AND PAINS IN CHEST , AND SOMETHING DIDN’T FEEL RIGHT. THEY TOOK MY BLOOD PRESSURE AND IT WAS IN THE 200′S IMMEDIATELY I WAS HOOK UP TO EKG MACHINES AND PUT ON MAGNESIUM. AFTER SEVERAL HRS, MY DOCTORS TOLD ME SHE WAS SCHEDULING A C-SECTION @ 7:30 PM THAT NIGHT. SO OUR SON WAS IN THE NICU FOR 28 DAYS .BORN @ 2.5LBS VERY SMALL AND FIESTY AND THINGS WERE GOOD . HE WAS BREASTFEEDING AND GAINING WEIGHT AND VERY ALERT… HE WAS PERFECT. MY HUSBAND AND I WENT TO DISCHARGE CLASSES AND EVERYTHING. THE HOSPITAL SAID IN 2 WEEKS HE COULD COME HOME ON A MONITOR IF HIS BRADY EPISODES WERE SLOWING DOWN. BUT MY HUSBAND WENT OUT OF TOWN AND I DID MY USUAL DAY ROUTINE TO THE HOSPITAL AND SEE OUR SON . AND THEN A NURSE SAID YOUR SON IS SICK AND I HAD NO IDEA WHAT WAS GOING ON . HE TURNED REAL WHITE HIS STOMACH WAS HARD AND PURPLE . IT WAS CRAZY MY HUSBAND RUSHED HOME FROM A BUSINESS TRIP , BUT THIS ALL HAPPENED IN A MATTER OF HRS! OUR LIFE COMPLETELY TURNED UPSIDE DOWN , SO HE WAS FLOWEN TO CHILDRENS HOSPITAL IN DC AND HAD EMERGENCY SURGERY LATE THAT NIGHT (3 HRS) . A LARGE PORTION OF HIS INTESTINE WAS BAD AND THE DOCTORS TRIED TO SAVE THE REST . SO HE WAS ON ANTIBIOTICS AND WERE GOING TO GIVE HIM ANOTHER CHANCE. SO THEY DID ANOTHER SURGERY THE FOLLOWING DAY, WHEN THEY WENT BACK IN IT WAS WORSE AND THERE WAS NOTHING THEY COULD DO . I CAN’T SAY ENOUGH ABOUT CHILDRENS HOSPITAL THEY GREAT AND GAVE US 2 CHANCES TO SAVE OUR SON’S LIVE . AFTER HIS SURGERY IN THE MORNING THE STAFF CAME BACK AND TOLD OUR FAMILY, THERE WAS NOTHING ELSE THEY COULD DO ETC. AND MY HUSBAND HELD HIM TILL HE TOOK HIS LAST BREATHE AUG 28 TH 11:15 AM, AT 28 DAYS OLD. BORN ON JULY 30TH – FUNERAL SERVICES ON AUGUST 30TH 2007. I DO NOT KNOW HOW I’M GOING TO GET THROUGH THIS? PLEASE HELP.

]]> By: dougg http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-89211 dougg Tue, 03 Jul 2007 19:57:56 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-89211 My son was born 5 weeks early and he developed NEC at 3 days old, we tried the medical path for two days and on New Years Eve a radiologist noticed he had previously ruptured, he was sent into surgery where they had to remove about 45% of his transverse colon(if you are going to get NEC its the best place to get it as the surgeon told us) he did well for over three weeks and actually got to go home (which he was the first to do that at our hospital) while waiting to get reattached. On day 2 at home he developed a blockage at his stoma back to the hospital he went, after a 8 hour surgery he was out and to the surgeons suprise with the lack of scar tissue he elected to re attache and remove his appendix. Now Connor is 6 mos old and every day we do a poop dance(when he goes) and he is 18 lbs. and 28" tall and normal development wise, but its always in the back of our mind stictures scar tissue bowel blockage My son was born 5 weeks early and he developed NEC at 3 days old, we tried the medical path for two days and on New Years Eve a radiologist noticed he had previously ruptured, he was sent into surgery where they had to remove about 45% of his transverse colon(if you are going to get NEC its the best place to get it as the surgeon told us) he did well for over three weeks and actually got to go home (which he was the first to do that at our hospital) while waiting to get reattached. On day 2 at home he developed a blockage at his stoma back to the hospital he went, after a 8 hour surgery he was out and to the surgeons suprise with the lack of scar tissue he elected to re attache and remove his appendix. Now Connor is 6 mos old and every day we do a poop dance(when he goes) and he is 18 lbs. and 28″ tall and normal development wise, but its always in the back of our mind stictures scar tissue bowel blockage

]]> By: Jon Mikel Iñarritu http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-89210 Jon Mikel Iñarritu Tue, 03 Jul 2007 19:55:26 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-89210 Tracy: I'm sorry for your lost. The physician assistant had to realize the need of ask a pediatric surgeon for further evaluation. Tracy:

I’m sorry for your lost. The physician assistant had to realize the need of ask a pediatric surgeon for further evaluation.

]]> By: TRACY http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-89206 TRACY Tue, 03 Jul 2007 19:30:55 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-89206 MY SON WAS BORN PREMATURELY AT 27WEEKS. ALTHOUGH HE WAS PREMATURE HE HAD NO BRAIN BLEEDS AND WAS WEANED FROM THE VENTILATOR AND PLACED ON CPAP. HE HAD TO RECEIVE PHOTOTHERAPY FOR HIS JAUNDICE, ABOUT DOL #9 WE NOTICED THAT OUR SON BELLY LOOKED SWOLLEN AND TOLD THE PHY ASST SHE PERFORMED AN ABDOMINAL XRAY AND STATED IT WAS REMARKABLE. IN THE MEANWHILE MY SON WAS EXPERIENCING FREQ APNEA'S AND BRADY'S AND HIS FEEDINGS KEPT BEING INCREASED. ALSO, MY SOME HAD A BOWEL MOVEMENT ON THE 4TH OR 5TH DOL BUT ONLY AFTER RECEIVING A GLYCERIN SUPPOSITORY. ON DOL #12 MY SON DIED FROM NEC. POST AUTOPSY SHOWED THAT HIS INSTESTINES WAS DUSKY COLORED BUT DID NOT SHOW HE HAD PNEUMOSTOSI INTESTINALIS. BUT LOOKING BACK AT HIS FIRST ABD XRAY IT SHOWS HE HAD DILATED LOOPS. IS IT POSSIBLE THE PHY ASST DID NOT RECOGNIZE THE THAT DILATED LOOPS, FREQ APNEA'S, BRADY'S AND DISTENTION ARE SIGNS OF NEC. I JUST WANT TO KNOW IF THEIR WAS SOMETHING MORE WE COULD HAVE DONE AS PARENTS TO HELP DIAGNOSE NEC. MY SON WAS BORN PREMATURELY AT 27WEEKS. ALTHOUGH HE WAS PREMATURE HE HAD NO BRAIN BLEEDS AND WAS WEANED FROM THE VENTILATOR AND PLACED ON CPAP. HE HAD TO RECEIVE PHOTOTHERAPY FOR HIS JAUNDICE, ABOUT DOL #9 WE NOTICED THAT OUR SON BELLY LOOKED SWOLLEN AND TOLD THE PHY ASST SHE PERFORMED AN ABDOMINAL XRAY AND STATED IT WAS REMARKABLE. IN THE MEANWHILE MY SON WAS EXPERIENCING FREQ APNEA’S AND BRADY’S AND HIS FEEDINGS KEPT BEING INCREASED. ALSO, MY SOME HAD A BOWEL MOVEMENT ON THE 4TH OR 5TH DOL BUT ONLY AFTER RECEIVING A GLYCERIN SUPPOSITORY. ON DOL #12 MY SON DIED FROM NEC. POST AUTOPSY SHOWED THAT HIS INSTESTINES WAS DUSKY COLORED BUT DID NOT SHOW HE HAD PNEUMOSTOSI INTESTINALIS. BUT LOOKING BACK AT HIS FIRST ABD XRAY IT SHOWS HE HAD DILATED LOOPS. IS IT POSSIBLE THE PHY ASST DID NOT RECOGNIZE THE THAT DILATED LOOPS, FREQ APNEA’S, BRADY’S AND DISTENTION ARE SIGNS OF NEC. I JUST WANT TO KNOW IF THEIR WAS SOMETHING MORE WE COULD HAVE DONE AS PARENTS TO HELP DIAGNOSE NEC.

]]> By: Tasha http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-78024 Tasha Wed, 06 Jun 2007 17:47:37 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-78024 My son was born six weeks premature and was doing very well. He weighed 6lbs 4 oz. He suddenly developed NEC and it was determined that all of his bowel was damaged. The doctors are really give him almost no chance of survival. I was wondering if there were ant cases this severe and the baby has survived and if so what treatments took place. I am really desperate at the point and am looking for any kind of reassurrance that my son has a chance. My son was born six weeks premature and was doing very well. He weighed 6lbs 4 oz.
He suddenly developed NEC and it was determined that all of his bowel was damaged. The doctors are really give him almost no chance of survival. I was wondering if there were ant cases this severe and the baby has survived and if so what treatments took place. I am really desperate at the point and am looking for any kind of reassurrance that my son has a chance.

]]> By: kerry browne http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-53240 kerry browne Thu, 05 Apr 2007 17:43:32 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-53240 my son was born 14 weeks early he is now five weeks old and 4 days ago he was diagnosed with nec since being diagnosed he has had a operation to remove the dead bowel he has lost about 45% his small intestines... i dont no what the out come is going to be. he has got a stoma which the surgeon has said he will operate in six months to stitch his bowel back together.. my son was born 14 weeks early he is now five weeks old and 4 days ago he was diagnosed with nec since being diagnosed he has had a operation to remove the dead bowel he has lost about 45% his small intestines… i dont no what the out come is going to be. he has got a stoma which the surgeon has said he will operate in six months to stitch his bowel back together..

]]> By: Erin Lindeau http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-30612 Erin Lindeau Thu, 08 Mar 2007 18:26:59 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-30612 I am a healthy 15 year old female who was born with NEC. At two months old I had 3/4 of my intestines removed. I had a 1% chance of survival but the good Lord wa swith me. I now have only 17 inches of my small intestines, and 22 inches of my large intestines. I just wanted to let everybody know that because of this medical history that I have, I am now currently interested in the medical field. I am a healthy 15 year old female who was born with NEC. At two months old I had 3/4 of my intestines removed. I had a 1% chance of survival but the good Lord wa swith me. I now have only 17 inches of my small intestines, and 22 inches of my large intestines. I just wanted to let everybody know that because of this medical history that I have, I am now currently interested in the medical field.

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