Comments on: FAQ – Necrotizing Enterocolitis http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/ A med blog about health, news, surgery, urology and medicine as it must be, unlimited. Mon, 23 Jan 2012 21:46:59 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: hayley http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-494363 hayley Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-494363 my little boy was born at 27wks and 6 days weighing 2lb 15oz he had his ups and downs but by 7 weeks was doing and feeding well and weighed 4lb 10 oz we thought it wouldnt b long untl we had him home, then they discovered then he had a hernia they operated and he got over this well but after ventilating him for the op they damaged his windpipe and gave him a stridor so they had to operate again to widen his windpipe he had to be sedated for a week to recover but was doing well then 5 days after his op we were called saying he was poorly and they thought he had nec they started giving him antibiotics and scanning and xraying him regularly 3 days later they said he would need an op then we got a dreaded call saying there was nothing more they could do for him 95% of his bowel had died he died in my arm aged 10 weeks am devasted a thought he was passed getting things like that :-( x my little boy was born at 27wks and 6 days weighing 2lb 15oz he had his ups and downs but by 7 weeks was doing and feeding well and weighed 4lb 10 oz we thought it wouldnt b long untl we had him home, then they discovered then he had a hernia they operated and he got over this well but after ventilating him for the op they damaged his windpipe and gave him a stridor so they had to operate again to widen his windpipe he had to be sedated for a week to recover but was doing well then 5 days after his op we were called saying he was poorly and they thought he had nec they started giving him antibiotics and scanning and xraying him regularly 3 days later they said he would need an op then we got a dreaded call saying there was nothing more they could do for him 95% of his bowel had died he died in my arm aged 10 weeks am devasted a thought he was passed getting things like that :-( x

]]> By: jessica http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-475963 jessica Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-475963 Hell everybody, I wanted to share my story with you and hope it leaves some of you with a positive outlook on your child's future. My daughter had NEC as a baby, and PDA surgery. She also had a perforated bowel..multiple times, a feeding tube for the first few years of her life, I don't remember all of the medical terms anymore but they had inserted a coin like object in her asophogas sp? to keep her from throwing up all of the time, so she wouldnt have to have a trac. My sweet girl also from NEC had a central line for many months, and fifteen surgeries that consisted but not limited to removing, intestines, colon,gall bladder,she had a colostomy and iliostomy multiple times and multiple times they were sewn back down,the last step was her name was added to the multivascular transplant list.... sooo the story goes on and on for two years. However by the grace of God she recovered before she had the chance to have the transplant and now she is a beautiful,happy,healthy, very intellegent 8 yr old girl. You would never be able to look at her and tell she was ever that sick! she has scars all over her back, chest and stomache, and she has never had a regular bowel movement, always watery, and they come on suddenly...any ideas on that one??? There is hope for all of these children! Stay strong for them! God Bless all of you and your beautiful children! my thoughts and prayers are with all of you! Hell everybody, I wanted to share my story with you and hope it leaves some of you with a positive outlook on your child’s future. My daughter had NEC as a baby, and PDA surgery. She also had a perforated bowel..multiple times, a feeding tube for the first few years of her life, I don’t remember all of the medical terms anymore but they had inserted a coin like object in her asophogas sp? to keep her from throwing up all of the time, so she wouldnt have to have a trac. My sweet girl also from NEC had a central line for many months, and fifteen surgeries that consisted but not limited to removing, intestines, colon,gall bladder,she had a colostomy and iliostomy multiple times and multiple times they were sewn back down,the last step was her name was added to the multivascular transplant list…. sooo the story goes on and on for two years. However by the grace of God she recovered before she had the chance to have the transplant and now she is a beautiful,happy,healthy, very intellegent 8 yr old girl. You would never be able to look at her and tell she was ever that sick! she has scars all over her back, chest and stomache, and she has never had a regular bowel movement, always watery, and they come on suddenly…any ideas on that one??? There is hope for all of these children! Stay strong for them! God Bless all of you and your beautiful children! my thoughts and prayers are with all of you!

]]> By: Helena http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-473098 Helena Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-473098 Hi Mike I'm happy to hear of a healthy person that has survived NEC (and PDA surgery) so perfectly! My son was born in week 26+3 and developed NEC after 5 days. He was so healthy the day before, everything happened so quickly. He had 20 cm of his bowel removed (2/3 left at that time) and a month later another 10 cm removed. He was very sick and we thought we should loose him several times. Today we are home and his is doing perfectly fine. Every day I remind my self how sick he has been. It's a miracle that he is doing so fine. We where lucky to have him at the best hospital in Sweden. But even there they made several mistakes that nearly costed him his life. The scar reminds us every day. Will it look less scary when he is your age Mike? Today it is about 8 cm long just above his belly button. Please don't hesitate to contact me if any of you want a "friend" in a parent with a "NEC child". Helena (Stockholm, Sweden) Hi Mike

I’m happy to hear of a healthy person that has survived NEC (and PDA surgery) so perfectly!

My son was born in week 26+3 and developed NEC after 5 days. He was so healthy the day before, everything happened so quickly. He had 20 cm of his bowel removed (2/3 left at that time) and a month later another 10 cm removed. He was very sick and we thought we should loose him several times.

Today we are home and his is doing perfectly fine. Every day I remind my self how sick he has been. It’s a miracle that he is doing so fine. We where lucky to have him at the best hospital in Sweden. But even there they made several mistakes that nearly costed him his life.

The scar reminds us every day. Will it look less scary when he is your age Mike? Today it is about 8 cm long just above his belly button.

Please don’t hesitate to contact me if any of you want a “friend” in a parent with a “NEC child”.

Helena (Stockholm, Sweden)

]]> By: Mike http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-472557 Mike Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-472557 Hi All, I was born at 24 weeks in April 1984, weighing in at 1lb 7oz and had both NEC and PDA surgeries... As of today, I am a healthy 26 year old with a business degree and played lacrosse in college. (no affects from mental or physical standpoint) Aside from the scar across my stomach and under my arm, you wouldn't know I was in your children's shoes. I feel for those on here that were not as lucky as my parents were and their son or daughter did not make it through. I just wanted to share my stats in hopes that some of you can look to the future knowing that your child can have a perfectly normal life in some cases. Mike Hi All,

I was born at 24 weeks in April 1984, weighing in at 1lb 7oz and had both NEC and PDA surgeries…

As of today, I am a healthy 26 year old with a business degree and played lacrosse in college. (no affects from mental or physical standpoint) Aside from the scar across my stomach and under my arm, you wouldn’t know I was in your children’s shoes.

I feel for those on here that were not as lucky as my parents were and their son or daughter did not make it through. I just wanted to share my stats in hopes that some of you can look to the future knowing that your child can have a perfectly normal life in some cases.

Mike

]]> By: Stephen http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-472008 Stephen Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-472008 I'm so sorry for everyone who lost their child to this horrible disease. On July 23rd my perfect little boy Keyon was born. He was 27 weeks at the time. He weighted 1lb 12oz . To the nurses he was one of their strongest baby because when he was born he was their tinest patients. Everyday me and keyon's mother went to visit our son at the hostpital it was great news either he was gaining weight or he was one step closer to coming home. On September 19th 2010 me and keyon's mother went to visit our baby boy expecting good news but when we arrived at the nicu there were about 6 or 7 nurses and doctors going in and out of keyon's room. Me and my girlfriend did not have a clue what was going on because he was so perfect the day before. The doctor on duty pulled us aside and told us that our baby boy intestines were swellen and that he will be shifted off to another hostpital and that they will do surgery and that Keyon will be jus fine. So me and my girl go back to Keyon room to be there with our child. They were supposed to be getting ready to shift our baby boy off to another hospital so I leave the hosptal to grab a few things from my house and meet my son and girlfriend at the hospital he was getting shipped to. I get a phone call from my girl saying that they were doing CPR on my son at the same hospital he been at so I tell her I'm on my way and hang up. But then she calls me a few mins later and tell me he was gone. I'm 18 that doctor never once told me or my girl about nec and how severe it was when we first arrived at the hospital. They never diagnosis him with nec or I never heard of it until my son was gone. I didn't get to spend my sons last minutes with him because the doctor never informed us about how critical my son was that day. I'm so hurt words can't explain how I feel. The night before or the day of my son death wasn't none of his primary care givers were with him.i jus wished they would of handled his last moments differently I wish they would of made sure me and keyon's mother was there. I'm so confused that's why I'm on the internet to get all the answers for this disease. Is it so rapid like that is it so severe for them little guys that there is nothing the people who get paid to save the children can't do there job. I need so answers plz someone can you give me some advice I’m so sorry for everyone who lost their child to this horrible disease. On July 23rd my perfect little boy Keyon was born. He was 27 weeks at the time. He weighted 1lb 12oz . To the nurses he was one of their strongest baby because when he was born he was their tinest patients. Everyday me and keyon’s mother went to visit our son at the hostpital it was great news either he was gaining weight or he was one step closer to coming home. On September 19th 2010 me and keyon’s mother went to visit our baby boy expecting good news but when we arrived at the nicu there were about 6 or 7 nurses and doctors going in and out of keyon’s room. Me and my girlfriend did not have a clue what was going on because he was so perfect the day before. The doctor on duty pulled us aside and told us that our baby boy intestines were swellen and that he will be shifted off to another hostpital and that they will do surgery and that Keyon will be jus fine. So me and my girl go back to Keyon room to be there with our child. They were supposed to be getting ready to shift our baby boy off to another hospital so I leave the hosptal to grab a few things from my house and meet my son and girlfriend at the hospital he was getting shipped to. I get a phone call from my girl saying that they were doing CPR on my son at the same hospital he been at so I tell her I’m on my way and hang up. But then she calls me a few mins later and tell me he was gone. I’m 18 that doctor never once told me or my girl about nec and how severe it was when we first arrived at the hospital. They never diagnosis him with nec or I never heard of it until my son was gone. I didn’t get to spend my sons last minutes with him because the doctor never informed us about how critical my son was that day. I’m so hurt words can’t explain how I feel. The night before or the day of my son death wasn’t none of his primary care givers were with him.i jus wished they would of handled his last moments differently I wish they would of made sure me and keyon’s mother was there. I’m so confused that’s why I’m on the internet to get all the answers for this disease. Is it so rapid like that is it so severe for them little guys that there is nothing the people who get paid to save the children can’t do there job. I need so answers plz someone can you give me some advice

]]> By: marisol http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-470547 marisol Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-470547 My son was born at 32 weeks on july22nd 2010 weighing 1 lb 11 oz he was extremely iugr. he was doing great they had been increasing his feedings at a rate of 4 ccs increment per day. On aug06/2010 i got a call that he had some infection but they didnt knowi where it was coming from i went to the hospital n he had a swollen belly not much but swollen n really fussy. i left the hosp @ 10:30 pm friday night. at 5:30 am saturday he was diagnosed with NEC by the time it was visitation @ 12:30pm on sat 7th 2010 he was complety purple veiny n his stomach very very swollen n black n 100% on oxygen the dr couldnt get any blood from him he was on 3 diff antibiotics on blood pressure medication hes intestines hadnt perforated yet but the dr told us he was very very sick she told us we had to make a desicion which my husband n i couldnt @ 9:07 pm sat my bby ryan passed away n my 6 yr old screamed n screamed n its so hard to watch that so i just wonder if the drs hadnt increased his feedings the way they did maybe my ryan would still be here i mean he wast at 13ccs a week when they had started him on 2ccs. i just cant help but wonder if maybe there was something else they couldve done for him or mayb diagnosed him earlier My son was born at 32 weeks on july22nd 2010 weighing 1 lb 11 oz he was extremely iugr. he was doing great they had been increasing his feedings at a rate of 4 ccs increment per day. On aug06/2010 i got a call that he had some infection but they didnt knowi where it was coming from i went to the hospital n he had a swollen belly not much but swollen n really fussy. i left the hosp @ 10:30 pm friday night. at 5:30 am saturday he was diagnosed with NEC by the time it was visitation @ 12:30pm on sat 7th 2010 he was complety purple veiny n his stomach very very swollen n black n 100% on oxygen the dr couldnt get any blood from him he was on 3 diff antibiotics on blood pressure medication hes intestines hadnt perforated yet but the dr told us he was very very sick she told us we had to make a desicion which my husband n i couldnt @ 9:07 pm sat my bby ryan passed away n my 6 yr old screamed n screamed n its so hard to watch that so i just wonder if the drs hadnt increased his feedings the way they did maybe my ryan would still be here i mean he wast at 13ccs a week when they had started him on 2ccs. i just cant help but wonder if maybe there was something else they couldve done for him or mayb diagnosed him earlier

]]> By: Kellie http://www.unboundedmedicine.com/2006/08/16/faq-necrotizing-enterocolitis/#comment-465793 Kellie Thu, 01 Jan 1970 00:00:00 +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 Thu, 01 Jan 1970 00:00:00 +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 Thu, 01 Jan 1970 00:00:00 +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, 01 Jan 1970 00:00:00 +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 Thu, 01 Jan 1970 00:00:00 +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 Thu, 01 Jan 1970 00:00:00 +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 Thu, 01 Jan 1970 00:00:00 +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 Thu, 01 Jan 1970 00:00:00 +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 Thu, 01 Jan 1970 00:00:00 +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.

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