When I was 19 I became pregnant with my 2nd child. I was very happy and somewhat scare because my son just turned 1 two months before Kaylee was born.
A week after my sons birthday party my water broke, I was only 5 months pregnant. I went to the hospital and they sent me home and told me to stay on bed rest and her would probably abort her self. What lovely news to tell anyone. 2 weeks later I was still losing fluid so I went back to the hospital. I was told that I couldnt go home and that I would be taken to a hospital 2 hours away. I thought I was going to die knowing that I couldnt be with my son. Know chioce I had to go.
I was at the hospital for 7 weeks on bed rest. How embrassing it was to use a bed pan. lol I had my beautiful little daughter on Oct 11,2000 at 27 weeks, she weigh 1 12.6oz 10in long. She wasnt breathing when she was born but she open her big blue eyes and just stared at me. I will not forget that moment. What a tiny little baby. I though the labor was going to kill me!!!!!
Kaylee was taken to the Nick U. When I finally was able to see her, fear over came me because of a of the tubes and wires, monitors, lights and the loud noises. All I could think was what the hell happened 7 weeks.
Fast forward a couple of months to december of 2000. Kaylee came home from the hospital the first week of december. She weigh a over 4 pounds, still very tiny. I asked the doctors if I could take home a monitor but I was told no that she would be fine. Everything was great, she was eating and pooping fine the only thing was she need iron drops once a day. Christmas came and went and so did New Years. Kaylee was still sleeping lots but she did wake up long enough to smile, cuddle, and eat. She still amazes me what a strong baby she was.
Hell stuck the second week of January. We all went to bed late. But Kaylee was having a hard time staying asleep, so I put her in her swing and that was the only thing that seemed to help her go to sleep. By morning I woke her dad up and told him I was going to lay down. He came in the room a few mins later and said she wouldnt eat much so he layed her down next to me and I was starting to go to sleep and just happened to look down and notice that kaylee had a blue tint to her and her stomach seemed a little big. I started screaming call the doctor. DR said bring her in. We got the and they call and ambulance. She flat lined 2 times on the way to the hospital. they got her there and she was somewhat stable but they didnt know what was wrong. Call a helicopter and we were in the car on a 2 hour road trip.
When we got to the hospital she was already in surgery. Come to find out she had a twist in her bowel, 90% of her bowel had died and it had to be removed. She came out of the surgery with 10% bowel a feed tube and on life support. She slow recovery, but she was on tpn off and on. We were told that our daughter has SHORT GUT SYNDROME.
She has had a 10% bowel lenghing a year after her 1st surgery.
She is doing very well and is in 1st grade now.
My question is has anyone else hear of these because sometimes it feels like my daughter is the only one?????????
I haven't heard of it either. I'm so sorry...please keep telling the story, because maybe someone has a baby who has a real problem with baby pooping (that is usually shrugged off and we're told, "just give it time"). I'm so glad she is better, and I KNOW you are! Hugs 2 u!
Rebbecca My grandson was born with SGS on July 31,2007. He is in Pittsburgh PA. this week being looked at by the doctors. He was born with only 10 centimeters of small gut or intestine and has not been able to take a bottle he has a central line and is on TPN. The only bad thing about TPN is that it will destroy the liver and he will have to have a intestine and liver transplant. We have to get him up to 20 pounds before he able for the transplant and thats going to take a long time. Sorry that this is not good news, but I know that God is in control and he can take care of all things. May God Bless you and your daughter. Thanks Mark
Hi Rebecca. My name is Stacie and I have Short Gut Syndrome. I have had Short Gut for about 19 years now. You can email me at ***@**** if you like. Or if you prefer researching it yourself, search under Short Bowel Syndrome, you will find a lot more information. There is a site on wikipedia. Also you can look at Malabsorption, because all short gut patients have that. Of course you can email me at any time and I will answer any question that I can. I also only have 10 percent of my bowel. I have been weaned off of tpn for over 15 years now and eat normal food for every meal. I go to the Dr monthly for iron and vitamin B12 shots, and about once or twice a year I have to have a blood transfusion. Other than that, I live a pretty much normal life. It takes a long time for the body to adjust to short gut, but many patiients to and can adapt and live long, healthy lives. In fact, I am now a sophomore in college. If you ever need to talk I am here for you...
what about a bowl lengthening? the lengthening is when they cut what intestines they have and split down the middle, stitch them up then and connect them back together. my daughter had it done and she has done pretty well with it. his bowel will grow with him as he grows. my daughter was on tpn off and on for 3 years. is your grandson on a feeding tube? if so, the higher the feeding the lower the tpn should go. has he ever had a pic line put in?
god bless you and your grandson
I'm so glad to hear that your daughter is doing well. Our 17-month-old son also has short gut syndrome. There is an amazing short gut community out there. Good resources include:
- the short gut wiki: http://grey.colorado.edu/shortgut/index.php/Main_Page
- see particularly the page on Omegaven, which is savings kids' livers so they do not need transplants: http://grey.colorado.edu/shortgut/index.php/Omegaven
- the SBS yahoo group: http://health.groups.yahoo.com/group/Short-Bowel_Syndrome/
WELL MY NAME IS NIKKI AND I JUST HAD A BABY GIRL WITH SHORTGUT. SHE ONLY HAS 10% OF HER SMALL BOWEL. AND THE DOCTORS KEEP TELLING MY HUSBAND AND I THERE IS NO HOPE. BABY TAYLOR IS 7 DAYS OLD TODAY 12/05/07, AND WE NEED ANY AND ALL INFORMATION WE CAN GET ABOUT THIS . I SEE THERE IS A 19 YEAR OLD GIRL ON HERE WITH THE SAME PROBLEMS AS MY BABY, AND IF THERE IS ANY WAY SHE CAN EMAIL ME THAT WOULD BE GREAT. PLEASE CONTACT US AT ***@**** thank you very much
My son also has short gut syndrome, he was 5 weeks old when I went to go check on him, he was blue, and had vomit around his head, and was cold. We were told that if I would not have found him he would have been dead with in 15-30 minutes. He has had 6 surgeries because his intestine contined to stricture on him; He is left with 20% of his small intestine. We were told he only had a 5% chance of survival, and a life on TPN. Well, here we are 3 years later, and my son has been off TPN for 2 1/2 years, His feeding tube was removed a year ago. He is doing well! For all of you going through tough times, there is hope, hang in there and keep fighting. If you need anything please feel free to email me at ***@****
My daughter was born with jejunum atrecia, a knot in the beginning of her small intestines. When she was two days old, they removed 67% of her small intestines.
My daughter was on TPN for 2 1/2 years and g-tube feeding. She was slowly weaned off because her liver was slowly failing. She also had to have 5 central lines(replacement for broken lines), countless pic-lines and had bouts of sepsis over 50 times and fungimia several times(the worst). Through this process she had about 3 blood transfusions.
The doctors could never give me any definate answers about her fate. When she was about 18 months, they suggested placing her on the donor list because TPN and g-tube feedings were not working. My daughter was so frail, she could not metabolize fats especially the microlipids they use with TPN.
I read everything I could get my hands on at the time, which were a few articles here and there. I found an article that explained why TPN was not effective for my daughter. The article stated that TPN or patients undergoing dialysis have a tendacy to deplete L-Carnitine in the blood. With low levels of L-Carnitine the body is unable to metabolize fat and fat absorbtion.
I showed the doctor this article. At first he did not take me very serious until I insisted that she be tested for her L-carnitine levels. Since this test is not standard, they had to send her blood sample to a lab that can test for this protein. When the test results came back, my daughter L-carnitine levels were close to zero. The doctor started giving her L-carnitine through I-V therapy with her TPN. Weeks later you could see the difference, my daughter skeleton frame slowly filled out. Several months later her jaudice disappeared which was miraculous because she was born juandice and stayed that way until after treatment.
A year later, they weaned her off TPN and at age 5 she was weaned off of her g-tube feedings. Now my daughter is a very healthy 10 year old. She's able to eat what ever she wants and the most miraculous thing is she does not remember her hospital stay. She do not remember any of it.
My advice to you are:
Take one day at a time
Ask questions, especially if something does not seem right
if you have any questions feel free to email me at ***@****
It is great to find this site. I am currently caring for my 16 month old great nephew with short bowel syndrome. I have not been through the early facets of his life, as I acquired him a couple of months ago, as a result of being in Foster care due to "failure to thrive". He has improved so much in the last 2 months. He is a great kid. He is on continous gastric tube feedings, and several medications. My concern is he screams so much when he has a bowel movement. Can someone give me an explanation as to why he is in so much pain when he has a bowel movement. I feel so helpless and can't comfort him!!!
My son was also born with 10% of his small intestine. He had his first surgery at 2 days old and the doctors at the hospital told us he had no chance of living. We did out research and found Children's Hospital in Pittsburg does intestine transplants. They told us that with only 10% our son could not sustain absourd enough nutrition to live, so he had to have a transplant. I don't want to post too much on here because I don't want to scare you or other families because it is a long road. If you want to here our story or just want someone to talk to who has been through it or if you just someone to talk to then email me ***@**** (my sn @yahoo incase we are not allowed to post email addresses here) I learned that when I am going through a hard time sometimes it is easier to talk to a stranger. Marisa
Wow I just read your story and it sounds just like my son's story. We were also at Children's in Pitts. They really are a great hospital and the transplant team is one of the best. It is a hard road to go through and I wish your grandson the very best! God bless you and your family!
Hi Rebecca. My name is Stacy and I was born with my small intestines tied in knots 25 years ago. They told my very young parents there was not much chance of my survival but, I underwent 6 surgerys over 7 months and eventually left the hospitol with less than 10% of my small intestines and I now live with short gut syndrome. My Mom fed me throught a G tube for 2 years and now I live a very normal life. I actually got married last month. The only reprocussions I deal with are that food passes through me more quickly than most and I have kidney stone surgery every few years due to the way I digest. I believe that the reason I survived is because of the prayers I received and my mothers love. I will pray for you and your daughter and I wish you the very best. Take care
Hi rebecca. my name is jamie. my son brayden was born 07/21/07. he was ten weeks early and weighed 3 pounds 10 oz. he was doing well and then at nine days old he got an infectin called nec. he had surgury immediatly at lucile packard childrens hospital in palo alto california. his intestines perfurated. they removed 65 cm. of his small intestine bowel. he has 52 cm left. we are currently at home after three months in the hospital. we are no longer on tpn as of a week ago.we still get lipids at night for 12 hours. we are doing very well. there is hope, and you are not alone. my family and i will pray for you!
hi iam a grandma who has a grandson that also has short gut syndrome. He was born in wpg, mb.His intestine was twisted and died, therefore he had to have most of his short bowel removed. He now has the small intestine attatched back to the large intestine; with not much of any intestine left. He is going for his assessment at the Toronto hospital for sick children, before he can be put on the list for a donor. rebbecca this is the hardest thing that I had to deal with in my life time, so far. I know that my daughter and her partner have a long road to walk before baby Jerry recieves his transplant.I have being been very negitive in the begining because the doctors were not giving us much hope. but now, I have every hope that baby will survive his journey. what else can i DO ? Hang on girl, there are lots of new technologies out there. Lets hope that one day this will be a thing of the past. Deanna.
i have a nephew who is three years old. for his whole life he's been on and off tpn and was told by doctors he may not live to see 5 years old. we were told that he have short bowel syndrome, which doctors said was the same thing as malrotation and volvulus. he was never been able to eat any solid foods, and he will only drink water for the whole three years of his life. he's had more than 15 surgeries and goes back and forth to the hospital for fevers and blood loss. my sister is unable to work nor care for her 3 older children because of her dedication she gives to her youngest sick son. i'am asking that if anyone knows of a good doctor that has experience with this defect please help my nephew. for him this is life or death. he needs a bowel transplant, and maybe a liver transplant too. he has to get blood transfusions too frequently and for him being on the tpn for so long it is damaging his liver. all i'am asking for is for anyone who reads this, just please tell someone the story because you never know if they have some information or sources that will help us. if you can not tell the story just please say a simple prayer for my nephew, that will help alot. just for reading this, i thank you all.
my prayers are with u and ur family. if i were u i would call johns hopkins hospital in baltimore md, they have a huge gi team. i am not sure were u live but i hope this helps u!! please keep in touch!!!!!!
my son is now 14 months old, he was born with n.e.c. he is now living with short gut, he does pretty good, he weights like 21 pounds now, but he goes from doing good to watery stools all the time, he is still on his special formula, neocate+1, and we can only give him certain foods, but here lately he is not doing good on even that, i was wandering if anyone could help me and give me any suggestions, what i can feed him or anything, please!!! thanks sheri& troy
hello, my son was born with gastroschisis and now has short gut syndrome. he was born 6 1/2 weeks early and was in the hospital for almost 4 months before he came home for the first time. He is TPN dependant, but does eat many regular foods, but very minimal amounts. when he was an infant, about 6 months he was placed on the transplant list for liver and small bowel. We were told that we had sixth months, no more than a year to find a liver for him or he would die waiting. six years later he is in kindergarten! He is still on TPN and is now being reevaluated for his transplant. By looking at him, it is almost impossible to see that he has this condition. He is constantly hospitalized for line infections and has had about 15 central lines placed. This is why a transplant is needed. Now, this is our only option for hope. My advice is not to give up hope. It is very, very easy to lose oneself when dealing with so many medical problems, but seeing them happy makes it all worth while. If someone would have told me over six years ago that my son would be and look this healthy, like many normal children, i would have never believed it. He has amazed so many, including his doctors.
Hi-(My dad wrote about my son b4, i just wanted to give more detail and share my story)
January 2007 started a new life for me and my family, i found out i was pregnant! i had my first sonogram about two in ahalf months when my doctor said something didnt look right..from then on out every sonogram same thing "something doesnt look right" They said at one time the baby had a inlardged stomach and possible surgury would be needed while he was in my stomach..throughout my whole pregnancy it was stressful. Never understanding what was going on or what was going to happen..i had my beautiful 4lbs 9oz son 8weeks premature. I got lucky with the labor it lasted about 45min. everything went great i didnt feel a thing..he came out crying and looking as tho nothing could be wrong. Two days after his birth, he was taking in for surgury..hoping it was just a blockage in his intestines. But God had bigger plans for us..Bentley(my son) was pronounced with extreme Short-gut syndrome on his daddys birthday August 2nd. Pretty much all of his smaller intestines had curled up and died he was left with 10centimeters which is not enough to live off of..he will be needing a small bowel transplant and depending on how long of a wait liver transplant as well.We have been to Pittsburgh Pa. once for evaluation and are headed back for our first appointment..i've done alot of research since the people that are suppose to be communicating with me really havent been doing a good job..i still havent gotten everything figured out as far as transportation..my ? for anyone in simular situations is When you get the Tranplant/Donor call it has to flow at a fast pace we are in Texas needing to get to Pittsburgh F-A-S-T is there any places anyone knows of to in touch with to help? Im kinda out on my own about this if your not in the hospital which we are not at the moment thank God everything is kindof in my hands to get worked out. Bentley is now 12lbs 1oz growing and being as normal as can be wouldnt even know if you saw him the troubles he has..i do ask you keep us in your thoughts and prayers we have a long road ahead of us. Thank You-Danielle
I have a 19mths old son who was diagnosed with in instestinal obstruction at birth. After two days of of live he had to have resection of his bowel. He has had a total of 4 resections, picc lines, broviac catheters, blood transfusions. etc.
He came home on a G tube and pregestimil. He was doing so well on baby food, however as soon as I transitioned him to solids he became very ill. From Jan - Feb. of this year he has thrown up ever week and has become distended. We spent 10 days in the hospital , he had to have his intesting and his stomach decompressed and was sent home with a partial obstruction.
My hardest part is finding a good complete diet that will allow him to gain weight and fodds that are low in acid and do not create alot of gas. I just wishI had more help.
Can you shed light on the diet you have for your child or resources you might know of.
He can not digest anything that has a lining or shell so many fresh veggies and anything with tomoatoes sauce he vomits whole. And most baby foods have citric and absorbic acid what to do ???
My family and I have alto of faith in the lord that he will be well, but it's hard seeing your little one vomit and loose so much weight they look like skin and bones.
God Bless you and your little one and know your are not alone, through our children we learn to love the Lord more.
" I can do all things through Christ who strengthens Me"
I have a little boy who is almost 2 who has Short Bowel Syndrome. He hada bowel obstruction due to a congenital abnormality called Meckel's Diverticulum. This was just after his first birthday. His belly swelled and was hard and red and he was vomiting. We brought him to the hospital near us then he was rushed to a bigger hospital with a PICU. He was in emergency surgury just a couple hours later and had 5 subsequent surgies with the last one to hook all the healthy pieces of intestine back together and place a feeding tube. It has been almost 1 year and he still has a feeding tube, but we are trying to see how he does without us hooking him up to feeds. So far he has lost weight. I hope that someday he can have the tube removed, but the important thing is that he is here with us. We were SO close to losing him! He also became septic, needed dialisis, had a blood clot, was on total life support, including TPN, and had unidentifiable infections. So, we are VERY blessed to have him with us! He will soon start recieving B-12 injections, so I need to learn how to do that now too!
But I wanted to tell you that some people may qualify for disability with this diagnosis. This would give you a medical card to cover medical expences, and in some cases, a monthly SSI check. Its worth looking into. Children may also qualify for a wish from CHILDRENS WISH FOUNDATION INTERNATIONAL. (You can Google that for a link I'm sure) Good luck and Many blessings to all of you!
Hey what is your son eating or what does his diet consist of? Bentley-my son is on Neocate its very light on hes stomach and also pedialyte. Im not sure if that helps you any i do know its tough not being able to feed your baby i wish i could everyday. Bentley also has had blood transfusions and has had two central lines so far..Thank you for telling me your story i will have you, your family, and def. your son in my prayers!
Hi Rebecca Bentley-my son is on medicaid and they set our trip up for us where we would have had a commerical flight..1. Dr.'s told me not to take him to even Wal-mart because he has such a low immune system...soo thats scary to think he cant go to Wal-mart yet he can sit in an airport with thousands of people? So i called my dr. and they perfer him not to be flown commerical...yet thats the only way medicaid would pay..also when medicaid booked the flight i wouldve been sitting in the airport having 3layovers, several hours at a time having to hook and unhook tpn..on my own..no help! STRESSFUL! So i said..NO to that i called around and found the Angel flight were pilots volunteer to take special needs babies in their own planes..which is incredible and i thank every single one of them for taking time & money out of their pockets and lives to help people like us...Bad thing is...never know until last minute if pilots have signed up for your flight. i had 2 pilots the day before we were suppose to be in pittsburgh and could not get my last one due to weather i had to cancel a very important trip because i had no one to help me get there...ive been tryin to find the RIGHT people to talk to because everyone i do talk to or tell my story to SAY they want to help and never come threw for me. Pittsburgh has not been a very good at communicating with me to let me know what im doing wrong or who i need to talk to . Its very stressful..we had to reschedule our appointment so i have about 2weeks to start all over again. Continue to please pray for us..i am nervous about getting that donor call if its taking us this long just to get up there for an appointment. Thank you so much for your prayers!
I've been trying, I never really get out much im always home with Bentley, his dad-Chris works alot..im tryin to get the Angel Network that Neal McCoy has to help and i am going to try to get ssi as soon as i can. Its just stressful because in situtations like this you would think people would be more caring and help like social workers, since we are out on our own and things..but they dont seem to be bothered with it..its my problem to deal with is how it seems..
u can call the ssi office and they can send u a paper to full out and then u have to get a letter from bentleys dr saying what his medical problems are. u can also do the came thing for medical assistance, you just have to call social services for that.
with medical assistance, if ur baby needs round the clock care u can get a nite nurse, it can be a pain to found them but they r out there.
there also companys out there that will help familys with finding what they need for their special needs childern, call the hopsital and ask for someone working in the social workers department, by law they have to help u.
u could also look in the phone book for developmental disabilities, and family support centers and make a wish foundation.
good luck and my thoughts and prayers are with u!!!!!!!!!!!!!
by the way cute baby pic!!!!!!!!
Thank You so Much! That helps alot! We have Care Team Nurses that help like come out to the house and take blood and things and they do, do alot for us..but, at the same time they aren't sure on how to get things together for the trip i've talked to social workers in Pittsburgh, here, and Dallas...they were trying to tell me to just move to Pittsburgh and it would make everything earier...for THEM. Hopefully i can get on SSI and Angel Flight will come threw for us..i will look into the things you gave me though to see if theres any other options that work out better for us! Thank you again!
Hi Rebbecca! Im just writting because i kinda needed to vint..haha. So far i feel like im getting alittle closer to finally getting to Pittsburgh for our appointment..hopefully! i had to reschedule once again this time i had all three pilots and a direct flight lined up as my backup, or suppose to be lined up as my backup. The day before we were suppose to leave i got a call one of the pilots backed out due to weather and when i tried calling medicaid couldnt get aholt of the lady that books my flights til the day before and she tells me she couldnt get me a direct flight because of springbreak! InSaNE right? OMG soo i had to reschedule for April 10th...3rd times a charm. I finally went to the SSI office today like you told me so that will help out alot! This last past week has been nutts our care team nurse has been out due to surgery soo ive been having different nurses come to the house every week which is stressful cuz i got attached to our one nurse shes awesome, but newho the nurse that came and drew blood this last week somehow must have contaminated the blood because the results came back wack, so im freakin out somethings wrong with Bentley when really it had just been contaminated also his TPN pump went crazy and ran in 17hours when its suppose to run 20 donno how that happened ...its been one thing after another but ive kept my cool somehow dont know how..ive been thinking alot lately about how much i wanna help others that are going threw simular sitiuations after Bentleys transplant and he is well i wanna start some kind of function to help people that have special need children, they shouldnt have to go threw soo much in such hards times, i know lifes not fair and everything wont be perfect but if theres anything out there to help better the sitituations i want to do it!Thanks for listening to me vint..LOL God Bless
I am 24 and was born with short gut syndrome (only 1/6 of my intestine) Through multiple surgeries and treatments I am able to live a fairly normal life. There are some things I must still deal with possibly for the rest of my life. If anyone wants to know more or would like some advice or to vent feel free to hotmail me at rwingslsoccerc.
We Are Going 2 Pittsburgh!! Im soo excieted God works in ways indiscribable this last week Bentley had his RSV shot by a home health care nurse...(every so many months a different nurse comes to give him his RSV shot) each nurse ask many ?'s once they see Bentley is on TPN, but this nurse was different, of course she had ?'s but once she had given him the shot she was about to leave when she ask me if she could pray with me...i said 'Yes of Course!' Then she left, later that day she called me, and im thinking something must be wrong, when she ask if she could tell my story and give my information to some people to see if someone anyone might possibly be able to help get us to pittsburgh...i say 'YES!' Then she calls today to tell me her mother donated us her air miles!! She set up the flight for me and everything i am sooo thankful!! God Answers Prayers please to everyone out there going threw tough times like us please please dont give up!! God has a plan and a WAY!! Thank you all for your prayers! We Love You All
Danielle, Chris, &Bentley
our daughter was born at 30 weeks and developed NEC at 4 weeks old.the infection killed off a large part of her small bowel thus bringing us to the short bowel syndrome.my question is has anyone else had problems with reactions to gluten wheat soy and dairy.the doctors and dieticians i find are not all that informative and i am feeling quite lost when it comes to her diet.we try to keep her on strictly rice product but some doctors have said to push her bowel and eventually it would adapt and some say we know our child best do what we feel is right for her,but i'm lacking in information and what effects this can have.each site i visit has different opinions than others and i find this all to confusin. i'm afraid we may be hurting our daughter either way we go.The doctors here are of no help they mostly focus on how well she looks for all that she has been through and tell me she is in for a long road,but they are not to informative.
can anyone help us or have they been through something similar and can relate.
shar and bran
from brantford,ontario canada
Hi - I am the mother of triplet boys born oct 2007 at 29 weeks. all three developed NEC but only one had to have surgery. Lane is now 13 months old and doing great. he was in the hospital for 6 1/2 months and came home on tpn and g-tube. Like most everyone else on this site, he has short gut (40 cm left) but has his ileocecual valve. He was off tpn within 2 months and had his g-tube taken out two months after that (aug 2008). Now 3 months later he is doing great but i am having a problem with feeding and pooping changes. he is on elecare and pediasure and eats anything he wants except juice. my main concern is diaper rash. It is horrible and bleeds! We have tried everything and nothing works. Today after all the frustration of trying this and that, I have him a bottle of whole milk...we'll see what happens. I'm not sure if it is the acid in the peidasure or what, but i have tried not feeding veggies and that did not work either. It is even bad just on formula. I think that moms definately know best. All the dr's we have seen in the hospital and out just cant give us any answers. they just dont know!!! I have been so frustrated at that answer over the past year and I finally decided that no one know my child like I do, and I know when he is or isnt tolerating something. AS far as the gluted or soy, we have no problems. they did say he may be lactose intolerant, but i dont think he has that either. I understand your frustration with doctors...I have the same problem. Please let me know if i can be of any further help or if you have any suggestions about diaper rash!!! (compared to what we have been through the past year i know diaper rash is the least concern, but it is another hurdle we have to overcome)
well my son was born at 31 weeks. he was born healthy, 7 days later he developed NEC. he has 30% of bowel left. he eats normal and is finally off TPN. he does scream sometimes when he has a bowel movement. can anyone tell me why it takes so long for babies with short gut to gain weight
My son Channing was born at 27 weeks an 3 days. He was born 3 month early at Fletcher Allen heath care. At birth he was 2 lbs 8 1/2 ounces an 14 1/4 inches long. Channing spent 4 an a half months in the NICU. For the 4 moths that he was in the NICU he was on a c pap breathing tube, feeding tube, an he was also on oxygen. He was doing good up untill 1 month be for he came home. His belly had bloated. When his belly bloated my son was treated for meningitis cause the doctors thought that was what he had.
They tried 6 times to get a spinal tap an could not get one. On may 30th Channing had his first shots. The day after he tuned blue on me. There was an infection and they did not know where it was. Channing came home 2 weeks be for my due date. My due date was June,26,2008. Channing was only home for 1 month. On augest,1,2008 Channing went to CVH (central Vermont hospital) because he turned pail white on me an running a temp of 100.5 an still climbing. So they transported him to Fletcher Allen Hospital. On the way up Channing stopped breathing so they had to put a breathing tube in. At this time his belly bloated again. When I got to FAHC Channing was on life support. Between the hours of 6pm an 7pm on August 1st Channing had is first surgery (emergency). When they did Channing’s emergency surgery they found some of his small intestines twisted that had to be removed. Two days later he had another surgery. They found a internal hernia. So the doctors had to take all of his small intestines an put them in a iv bag on the out side of his belly. Channing had a total of 7 surgery’s in 4 days. On the 7th surgery Channing lost 2/3 of his small intestines cause they were dead.
Channing now at 10 moths old has been on TPN an lipids. He has been on this for 9 months of his life. Channing has been on a central ( in his chest). He has also had 4 pick lines in his groin. Channing now has a pick line in his neck. He also is still on a feeding tube. He is now on 16 hours a day of TPN an Lipids. He gets lipids every other day. Channing also has a stoma in a bag. Channing is still in Fletcher Allan Hospital in Burlington Vermont. Channing has another surgery this month on the 23rd.Tt is going to be a long road ahead for him an for his family. If there is anything you would like to know about Channing or an question’s or need someone to talk too please feel free to email the family.
This is Channing now
Mother or email
Aunt… the c an r is lower case.
I am glad to have found this sight. My grandson, Layden, was born 3/16/2009 6 weeks premature. The Dr. noticed that he had enlarged bowels during a routine ultrasound the begining of Jan. after that, my daughter was having an ultrasound weekly until the end of feb. when they were changed to 2 times a week due to the dialation of the bowels. A c-section had been scheduled for 3/26 but the little guy wasn't moving right on the 16th so an emergency c-section was done. On the 18th he had surgery. The surgeon came out and told us that the large intestine was intact and that he had to remove a majority of the small intestine, due to the blood supply for the small intestine went to the large intestine, and a portion of what he saved was questionable as to wether it would survive or not and wasn't sure if there was going to be enough left for Layden to survive on. Apparently, premies have about 20 cm and he has been left with about 10 cm in which a portion of that is questionable as to wether it will survive.
He has been getting TPN and lipids. His weight went down to 4 lbs. He is back up to 4lbs 10oz. Being fed straight breast milk at 8cc every 3 hours and the TPN is being decreased as the amount of breast milk he gets increases.The Dr. told my daughter that she has no choice but to breast feed Layden until he can start eating on his own because he will not be able to tolerate formula.
Is there a special diet that will need to be followed??
I asked the Dr. about a transplant but he didn't seem favorable. I also asked about what type of research was being done as far as attempting to grow protions of intestines from stem cell research or cord blood. He didn't seem to think that there was much out there.
I have to say that reading these stories have given me more hope as to Layden's future. We will continue to love and pray for him everyday.
I have heard of it, my baby was born at 31 weeks and was doing good, all the sudden she as well got very sick and her belly got swollen and turned blue. She was transfered o another hospital and they diagnosed her with NEC, she was taken into surgery and had more than half of her bowel removed. She is not on TPN and has not yet started feedings. I was told that she has very little of her bowel left so she might have short bowel syndrome. It all depeneds on how well her body handles my breast milk, which i hope she handles good. That will be the only thing that decides whether or not she will continue on TPN. I have high hopes for her and hope her little body can take it. She has a ostomy bag and is a little over a month and getting very close to her due date 2 weeks away.
My grandson, Landon, was born on April 20th, 2009. A few hours after birth his abdomen began to swell and it was apparent that he was losing blood. He was rushed to Brenner Hospital, a part of Wake Forest Baptist Hospital, in Winston-Salem, NC. At Brenner an upper GI was done and a blockage was discovered. He was immediately taken to surgery. Surgery revealed that he had malrotation and Vulvulous. His small intestine had twisted and the blood supply had been cut of to the intestine. Virtually 100% of the small intestine had died, not counting the duodenum. We were told that he would not survive and that we should prepare to let him go. Within hours of the surgery and the prognosis, and by what I can only describe as a miracle, we were contacted by a family that had a child born with gastroshisis and had lost most of his small intestine. They told us that their son had lived on TPN until he was four when he received a liver and small intestine transplant. He is now seven and doing fine. They urged us not to let him die. We told the surgeons to do the operation that would give Landon a chance for life and a possible transplant. They removed the small intestine and connected the large intestine to the duodenum. They inserted a line in his right thigh for the TPN. It has now been nearly a week and a half and he seems to be recovering well. We have made contact with doctors in Boston and are planning to contact doctors at Georgetown and anyplace else that we can talk to someone about a transplant. We have been pushing for the omegaven but are being told that we probably can’t get it until there is a problem with the TPN, such as liver damage, which doesn’t make sense to me. We are trying to decide if we should push for a transplant sooner or later. I have asked the doctors here if they have ever seen a case like this one. They are telling us that it is very rare. Babies that lose 100% of the small intestine at birth just don’t survive. Are there any other babies and families out there that have been through what we are going through? What should we expect and what should we do? We have started a blog for people to keep up with Landon. It tells what has happened from the beginning. The address is: www.landonjoines.blogspot.com . Thanks for any help. Where is a support group?
Eldon, God bless you. You seem VERY motivated, and very intelligent, and I think you are well-equipped to find information for your family.
I did a google search using the terms "Primary volvulus infant" and found a LOT of medical abstracts, some dealing with factors of infant survivability. The medical jargon might make your eyes cross, but I think contacting the researchers themselves might be the best way to go.
Your post is very heart wrenching. I tried to find a web support group for you but couldn't - but I think you may be able to find support from the researchers.
God bless, and prayers for dear Landon He already has a head start with a committed and loving family.
well Layden has yet to come home. The dr tried adding Neocate to the breast milk to add calories and the night before he had blood in his stool and he wasn't gaining weight. Well, he wasn't gaining weight either. so. he was put on an iv and got nothing by mouth. Another picc line was put in and back on tpn.
2 days ago the picc line was removed when the feedings got above 30cc every 3 hours of breast milk with some type of oil to help break down the breast milk in every other feeding. he has dropped weight again. we are hoping that is not a trend. he has to be gaining weight in order to come home.
Eldon, don't give up hope. The surgeon that did Layden's surgery told us that he had to remove most of the intestines and that he may not make it. That was 8 weeks ago. They ended up doing a resection. The first time Layden was taken off TPN and was getting breastmilk. He started "dumping" which is when the food goes straight through the gut for the most part.
Right before he was taken off TPN the 2nd time he weighed 6lbs 1.1 oz. and is at 5lbs 14 oz now. In order for him to come home he has to be gaining weight.
I had to chuckle at a new dad getting off the elevator on the nursery floor the other day when he commented that he would be glad when they get home after being in the hospital for 3 days. I told him to try 7 weeks. I think he was greatful.
Hello, THERE IS HOPE!!
My sons name is Jaydon and he was born sept 4, 2008 at 31 weeks, at 3 pounds 12 ounces. He was an amazing baby but then a week later during his nicu stay, his intestines enlarged and developed Necrotizing enterocolitis ( NEC ). He had an emergency surgery and they removed 1/3 of his small intestine, and had 2 stomas. Sadly a month later when they went to reconnect his intestine, they found more dead bowel and he was left with only 1/3 of his small intestine. After all of that he was on a special diet and weaned off tpn and was on Pregestimil, bottle feeds!!. turns out he wasn't gaining enough wieght so i decided to let them do the GTUBE procedure and back of TPN. Today, 8 months after his birth, we are still in the NICU waiting to be transferred out of state where there will be a constant PED GI specialist every week. (we live in alaska!!, not the greatest short gut and home tpn support). He is on TPN with lipids 3 times a week (weaning) and is on 37 ml/hr 26 cal pregestimil. He gets glutamine .6 grams at 1 and 9oclock , loperamide , lactobisillis, sodium acetate , and treatment for his Jaundice ( from the TPN ). He is now 14 pounds!!!!!!! which is good for SBS baby with all the trauma he's been through. He is the cutest and oldest baby in the NICU with lots of love from the nurses. I am there 10-12 hours a day and do all of his cares. I do the broviac dressing changes, meds, gtube cares and all. yes its stressful but its coming to the end!! im soo excited to move , hopefully to Tuscon, Arizona following DR. ALLEN PRATT. his gi spec.
Thanks for reading my story, and Please pray for my son. And always remember that it could be a lot better, and also a lot worse!!
Please email with more info if you or your kids have gone through the same trauma. I love talking with other people about this and HOPE THERE WILL BE AN EXPLANATION FOR NEC SOMEDAY!!
Jaydon is currently at the Providence Hospital, in anchorage ak.
My daughter as you know was born at 31 weeks by cesarean due to reverse blood flow. She was small for gestational age and weighed 1pd 10 oz. She s tpn dependent as of right now. they took out all of her large intestine and appendix and also about 21 cm of small intestine. She has about 44 cm of small intestines left. The doctors know how much intestines she has but are not sure how much of it really works. They have fed her on and off. They gave her 2 ccs of breast milk every 3 hours and 3 hours of and on and on. Then they stopped it because all she would do is dump it and her abdomen would get hard. May I remind you she has a broviac in her left leg and a iliostomy.Then they tried 1 cc every hour, the problem is that when they pull back to see how much is left it's always about half of what they put in. They put in a ng tube through her nose to give her food. The last time they tried giving her neocate at 1cc every hour and she had bile come out of her ng tube and ostomy. From what it seems like she will be coming home form the Nicu on tpn. She is not on oxygen or anything, just on tpn and is also in a crib. She weighs 5pds 8 oz almost 6 pds now. She was born march 6,2009 2 months before her dues date.She has short gut syndrome and from what I was told she might need a transplant. I don't even want to think of that yet, I have read the percentage rate of survivals with that. I am trying to get her on omegaven but the insurance has not yet approved it. The thing is she would have to go to Boston to get it. We are in California and they don't want to get it here. My hope is that all she needs is time, maybe with time as she grows and her bowel stretches it can adapt and take over. I forgot to say she has no icv and the small part of the intestines that they took out was the distal part. Does anyone have any advice on what I should do? or on how to start her feeds or any formulas or anything?
I just happened to stumble across this site and have read bits and pieces of the stories. My son, Waylon, was born August 14, 2003 - mear minuets before his due date of 08/15. The doctors said he was sepsis, but it never went any further then that, he was in NICU for 2 days to get feedings and medication. Fast forward to February 15, 2009 - Waylon had been perfectly healthy up until then. We had been to a birthday, came home gave him his bath and put him to bed about 8:30 - to get ready for scholl the next day. I settled down in my recliner to watch Desperate Housewives. Waylon came out of the bed room with his pants down around his ankles and was crying. I asked him what was wrong, he said his stomach was hurting. I asked him if he needed to poop, he said no,I said do you need to puke, he said no, well maybe I can poop. So I took him to the bathroom and sat him on the potty. He threw up all over the floor. Then he pooped, then he threw up again. I knew something wasn't right. He was very pale, almost grey and his lips were grey as well. He was crying and complaining, and Waylon NEVER comlains - about anything. So i called my parents, who live next door. My dad came down and stayed with my younger son and mom went to the local ER with me. We got to the ER about 10:20. We were there all night - they did CT scans, said he had an obstruction. Called an ambulance and Waylon and I left at 6:20 a.m. the next morning headed to Morgantown, WV to a bigger/better hospital. We got there about 8:00, went into the ER and were SWARMED with doctors and nurses. We were in the ER about 30 minuets, then wisked upstairs to the PICU. Waylon wasn't really complaining about anything, but something just wasn't right with him, I knew it,but couldn't put my finger on it, then he started hulicinating. Seeing peopel that weren't there. . . things like that. There were 3 doctors and about 10 nurses in his room, I was asked to leave, I refused. I said I could handle it, as long as I could stay with my baby. They said no, you need to leave. And I was "escorted" from Waylon's room at 11:30 he was taken to surgery at 12:30 - after they intabated him and he coded on the table. I was 2 hours from home with no one to lean on. My parents had to wait for my ex-husband to come and get the baby, and then they would head up to us. they showed up at 2:00. Waylon's dad showed up about 3:30. At 4:20, the doctors came out and said we could see him. He was hooked up to everything imaginable - you all have been through it, you know how they look. He has malrotation of the bowel with a vovulous, he lost all but 10 cm of his small intestines. We were in Morgantown hospital for 5 weeks and then were transfered to Childrens Hospital in Pittsburgh for a week for the evaluation for a transplant. I love both hospitals. They do amazing work.
It has been 5 months since this happened, and we are finally getting into a routine. Waylon has an illiostomy and a broviac for his TPN, he gets the TPN 18 hours a day. He is doing so much better once they put the broviac in, before that, with the PICC line he was getting infections every 2 weeks. And we would have to spend another week in the hospital.
From what I understand, it is kind of unusual for someone to develop this short gut syndrome this "late" in life, it usually happens at birth or shortly after.
I've been looking for a support group. I am very depressed.
Hello everyone. My name is Melissa. I am 28 and I had my first surgery for Short Gut Syndrome the day I was born. I have had 5 more surgeries since. I have never really read up on the syndrome and my family (and doctors) have never told me really anything about it. I finally decided to research for myself. I see that there is so much I do not know. I have been so sick and have random pains. Reading online has shown me that my pains are not all in my head and that they are related to SGS. I was always told that my pains were mental by family and even my husband.
my son also had short gut syndrome. he was born July 8,2008 and had past july 14,2008. when i was in the hospital i would tell the nurse that there was somthin wrong with my baby.he was throwing up that would projectialing out of his mouth and nose. the nurse would just say hes ok its just some aminotic fluid.he also would not eat.on the 9th of july it was around mid-night one of the nurses came in to try to feed him the look at his stomach an seen that it was a light purple and blue.thats when they sent him to the nicu. they told me that he had short guy syndrome. he then went to john hopkins and had emergency surgery.he had a about 4 surgreys the last one was when they told us that his intestines where still dieing,there was nothing else they could do.so i took him off of life support and rocked him back and forth. he looked at me with his big blue eyes like he was telling me it was time to go i told him he did a good job and it was ok to go.he past at 5:45 july 14.that was the worst thing i had ever had to do in my life is say good-bye to my baby.i will pray for every ones baby that has this.i hope and pray that they live a strong and heathly life.
I know it has been awhile but I want you all to know that Layden came home from the hospital around May 13th, 2009. He was on neocate until about 1 month ago. He now weighs about 14 lbs 8 oz and doing great. He only needs an iron supplement and is getting normal formula mixed a little stronger then the directions.
I was talking about Layden at work and one of the nurses told me that University of Nebraska has a wonderful Intestinal Rehab Clinic. They have teams of nurses and doctors that work with the patients and families.
Apparently this nurse has an adopted daughter that has short gut syndrome and had a g-tube for a while and this is where she takes her daughter.
I found this site by the grace of God!.. My niece just had her daughter on December 04, 2009 and she has been diagnoised with Short Gut Syndrome, and was taken to a more equiped hospital only hours after being born. She has since had 2 major surgeries and was left with only 18 centimeters of her small intestine, with BP not regulated, on a ventilator and she is swollen severly. Please pray for my grand niece's survival b/c they just gave her a very low percentage for survival, but we do know that God has the final diagnosis. I wish everyone that is experiencing the same or similar situation all the best and I will be praying for you all. God Bless Everyone!
My name is Olivia. I am now 19 years old. I was born in 1990 at 24 weeks weighing 1 pound six ounces but after being born, I went just under a pound. I have suffered from many medical problems including retinopothy of prematurity where i lost my vision in my right eye. I suffer from short gut syndrome. I was on tpn was I was a baby at three I had my entire large intestine removed and part of my small intestine. I was on an osotomy bag but after a few months the ostomy was reversed and my small intestine was connected to my illio secum valve. I have lived with many problems overcoming many medical obstacles. I had adhesions, and many digestive problems. I graduated high school last year. I am attending college studying sociology in order to be a medical social worker to help others. I just wanted to let everyone know that it is possible to have a successful life with short gut. It has often hard for me as a teenager with a boyfriend to deal wtih bathroom issues. I am often embarrested but I get around the embarressing issues by turning on the water or the shower to drown out any embarressing noises. I have alot of friends and a family that supports me non stop. I go to a GI doctor once a year to talk about my liver, and my intestional track. I have monitored my diet to allow for proper digestion. If anyone wants to talk to someone about any type of digestive problem I am here. I feel the need to help anyone I can. Please know anyone can have a normal life no matter what their situation is anyone can overcome their disability. I wish you all the best of luck and for you rebbecca to know that your daughter will grow up to be a beautiful amazing person, and your not alone!
I'm sorry to hear about the hard times you've seen.
I too can understand what you've been through. August of 2009 I had a healthy 7 lb 3oz baby boy. We took him home right away. But I noticed he fussed a lot. I didn't worry because according to the Doctors, it's just a symptom of Colic. So I went on with my daily activities trying to help him get through his crying spells.
We were at home for two months and on Oct. 30, 2009 I started to notice that he was projectile vomiting. Nothing he ate would stay down. He was also crying a lot as if he was in pain. I called the Doctors immediately, and they said, he's probably got a tummy ache due to the colic, try exercising his legs. That made things worse, he persisted in fussing even more. That night he was grunting a bit and still vomiting. He didn't want to eat all night, and would wake up crying for no apparent reason. The next morning he refused to eat alltogether. He was lethargic,and yellow looking. And he wouldn't respond to anything. He just grunted, as if he hurt. So I took him to the doctor, and while in the waiting room at the doctor's office, he started to vomit blood. It terrified me! We were rushed to the ER and transferred to Roanoke Memorial hospital. He had 2 emergency surgeries and lost 3/4 of his small intestine,and his ileocecal valve. He has had a total of 9 surgeries to this day. He didn't have a bowel movement for a month after the surgery,and the doctors were getting concerned, and opened him up again for an exploratory surgery. He was on TPN and Lipids, and a feeding tube continuosly. He was fully sedated for about 2 weeks, and I missed his cry. Finally after the exploratory surgery was a sucess, he was beginning to increase his feeds, and having regular bowel movements, although very loose. He had his feeds up to 10 ML per hour, when something went wrong and we were back at square one. He spent 1 month in the PICU, one month in the NICU, and one more month back in the PICU- we were finally released on January 18th. He has been in and out of the hospital since then because of complications with his central line, but other than that he is doing great. Babies bounce back very quickly, and it takes a strong woman to have to go through this. I hope my story brought some encouragement, and know that you are not the only one! Take care and God bless you!
Also if your baby is going to be on TPN long term, there is a new drug called Omegaven which is a lipid substitute. Lipids are damaging on the liver and they may require a trasplant, but omegaven is safe on the liver...ask your doctor about it. And I strongly reccomend getting a consultation in the Pittsburg Children's hospital...they have saved many lives and specialize in short gut syndrome...good luck!
Hi my name is Jennifer and I had a son on October 4 2007 we live in Houston. My little angel was born with jejunum atrecia. On his 2nd day of life he had surgery and had majority of his small bowel removed and was left with 15 to 20 cm. He was in the NICU for 4 long months. Within those 4 months he had 2 obstruction. So after 6 weeks of his little life he already had 2 surguerys. He is TPN and lipids dependent and also has a g-tube. In Feb 2008 he came home not long after that he starting getting sick. For a year and a half he went thru 27 surgerys, 7 line inplacements, and 2 gtube. He has caught every infection you can imagine. He had a liver biopsy and that cause him to have internal bleeding and cause for his little lung to collapse. He was sadated for 1 months and within that time he had 3 chest tube and a chest surgery to drain the fluids from his lungs. At that time his doctor told us that my son could lose his life. I was so devestaded and the only person on my side was my in law and his dad. Thanks to them I was able to stay strong. Thanks to the good Lord my son got better and was able to come home but the story of his long journey is far from over. Now in 2010 my son is 2 1/2 years old and weights 22 pounds. He is still on TPN and lipids and the ratio of that is 60% TPN and 40% intral feeds. His liver is slowly falling. He does not tolerate more than 29cc of formula per hour. The doctors still can not give me any answer to why my son can not absorb his feeds. He has the most watery diaharea. His spleen is very large. We are currenty in the hospital and since he has been here he has caught 2 more infection. He has not had any transplant but the doctors are suggesting it. What I would like to know is there anyone out there that has any ideas in how I can try to get my son to gain weight and help into weening him off TPN. My understanding is that the more feeds he takes the TPN can get weened off. I am now going to try to blend regular food and push it in thru his tube because he does not swollow solids. Here is my email if any would like to contact me or have any suggestions. Sometimes I feel like Im the only mom with a very ill son. Thank you. ***@****
we are looking for other ways (tricks) to get my son to eat, he drinks fluids and will chew food but when it comes to swollow he spits. Does anyone know of any certian types of food or herbs we can try to feed or give my son that would be good for his intestines and might help him absorb. Thank you and God Bless each and everyone.
Thank you for all your comments on this site, it has helped me a lot. My first child Brandon was born 3 weeks ago today and he has SBS. This was spotted hours after he was born, he was transferred to a specialist London hospital and had his first two surgeries within the first three days of his life, leaving him with just 28cm of his small intestines.
Thankfully he has recovered very well from his surgeries, and is now on 11ml every hour of neocate which he takes through a bottle if he is awake and on 1.6ml of TPN every hour through his central line. The doctors and surgeons have been very good, but I had no idea how long my poor boy would be in hospital, nor the long road that still lay ahead of him. You have all given me insight to this and now I just need the strength to continue.
Our little boy is a strong fighter and we will continue to be strong for him. With prayer and supplications he has made it this far and we know that with more prayers one day he will be back home with us.
Congrats on you new baby boy. Women naturally have an inner strength that comes out when needed. Trust me you got to.
I had my little girl (Kennedy) August 2009, Born at 26 weeks. She is now 10 months old. And it still seems like the beginning for us. She still has a long way to go. After 3 weeks of life she developed NEC, which left her with 18cm of bowel. She is on TPN for 18hours a day and on G-Tube feeds for 24hours a day at RATE 26ml. Kennedy is now 18pounds, but she was 2pounds.
She is not crawling, walking or rolling over yet, but she is sitting up on her own. It’s funny how I get enjoyment watching her just sit up and reach for things. She smiles a lot to. At the beginning I think they tell everyone that their child might not make it.
And soon you will be having the same precious moments.
I cried a lot in the beginning and there was even times when she looked life less. But she is a fighter. Reading the stories on here taught me that once a baby put in there minds that they are going to keep living and keep fighting They Do.
Glad I found this site. I thought that I would share our story. My daughter Glenda was born in Vancouver , British Columbia. She was six weeks early weighing 4 pounds 7 ounces. She was also born with her small bowel on the outside. She had surgery the night she was born to put her bowel back inside. She then required a second surgery and we found out that she was born with only 50 cm. of her small bowel and it had 13 blockages. So the dr.s repaired the blockages and also had to ressect more than half of her large bowel and illeosecal valve. She had more surgeries after that and severl central lines. It took a very long time for Glenda to be well enough to come home. She is now 15 years old and thriving. God love her. My advice to parents facing this is just try to be patient. Take it one day at a time. Some days will be very tough and others will be days to celebrate. Don't hesitate to ask the questions that you want answered. Pray lots. Good luck to you all and God bless.
Thank you so much for your comment. It is so good to hear how well babies with similar problems to Brandon are progressing. Kennedy sounds like she is now doing so much better and I cannot wait for the day when Brandon is home and sitting, crawling etc.
Being patient is the hardest thing ever right now, as Brandon looks well, he is putting on weight everyday and is now on 15ml per hour of Neocate.
Our main frustrations is not fully understand exactly what everything means, as the doctors etc do update us, but the terminology is mind blowing most of the time. I think I shall have to right myself a list and get them to explain them to me! If anyone has a list of questions regarding TPN, Neocate, Illeosecal value, I would love to see them.
Hi all, I have a now amolost five year old with short gut. She was born with her intesines on the out side of her body, all but 17 centimeters had died, so they where removed. She was not expected to live. We have been through the TPN, through the iv to the heart, Each 90 days she would shower with infection in the Iv line. We stid in the hospital, with only three 72 hour trips home, just to be returned by helicopter or life flights. After 18 months of this we chose the setp procedure, a bowl lengthing surgry. Thisw has saved her life. Sge still have her GT tube, and has over night feedings. We still have to worry about bacterial over growth in the intestines which we are treating with a daily medication. Along with other medications we are doing failry well. Although her immune system seems to have issues fighting normal child illinesses we have stayed out of the hospital for over two years.
I have come to know the signes of trouble before they get away from me. She has pedisure during the day as the absorbtion of anything PO is low, but we are doing very well. She is almost 5 very smart, weighs 38 lbs and is right on track hieght wise. She is bowel potty trained but do not think urine training wil happen as there is not enough inside her tummy to feel any pressure on her bladder. Pus fluids go straight through for the most part, so her bladder is never full.
I invite any opne who has questions or would like any ideas or information to contact me. ***@**** I will be setting up a blog for this topic so we can all talk and post our expereinces, look for it at soon!
God bless all those who are facing the issues we are living with. There is great hope and blessings for these little ones. Jean albee
Hi I have a 3 year old with short gut. Its has been a tough road. She was in the hospital til almost 9months old. she came home and was okay for a year after that we have been back and forth in and out of the hospital for getting backed up and vomitting. I am tired and dont know where to turn because im not getting the info i need im just affraid something bad is going to happen. has anymone else had this problem?? please help
My son, Aidyn, was born six weeks early in April 2009 and was very healthy, but after only 4 days he got NEC. He was left with 15 - 18 cm of small bowel, no IC valve and most of his intestines. I personally believe he got NEC from me taking Magnesium Sulfate to stop contractions. I later read that it can cause an ileus in the patient, causing a dispution in the digestive system. I will research that further.
Anyway, the doctors in the NICU didn't think he would make it, but he kept pushing on. After 5 weeks, they discharged my son on TPN and lipids with no feeding plan. He had an ostomy. They even suggested we put him in a hospice home. Well, we didn't believe in doing that and researched before he was discharged. We came across Omegaven (emulsified fish oil, Omega 3's). It's an alternative to the traditional IV lipids (soybased, full of bad Omega 6's, causes the liver damage). My son's liver was failing and he was very jaundice at discharge. We contacted several hospitals who used this Omegaven and were given the best response by Dr. Puder from Children's Hospital Boston, he assured us they could get Aidyn on Omegaven and hopefully spare his liver. Well, we flew Aidyn on a commercial plane, with both pumps running (we were scared to death), from Arizona to Boston. Aidyn was 6 weeks old. He was in the hospital for 5 days and started on Omegaven as a part of a clinical trial. After being treated outpatient for 9 weeks, we finally came home from Boston. I saw Aidyn transform from a sick, sleepy, jaundice baby, to an active infant with clear eyes and skin. His bilirubin went from its peak of 9 to just under 2. His intestines were reattached at 5 months old and he's been doing very well. We travel to Boston every 8 weeks to continue Omegaven treatment and for the Intestinal Rehabilitaion program there. They are excellent. He is currently weaning frm TPN/Omegaven. He's on it 3 nights a week for 12 hours and on hydration the other 4 days. He's never had any tube feedings (except a few days after he was born, a bad idea I think...probably caused the Nec from having the Magnesium sulfate in his system. Apparently, he wasn't eating enough so the docs ordered an ng tube be placed to help a little with feedings...). No oral aversions and loves to eat. He takes Elecare in five 5 ounce bottles throught the day and eats a couple meals. The goal is to have him off all IV fluids by the end of the year. He's 21 lbs and the docs are pleased both here in Arizona and in Boston. He has had his share of line infections, line replacements and some overgrowth issues, but he has always had a good quality of life.
I tell you this story because not all doctors know what's right. I know that Texas Children's Hospital uses Omegaven, but it may only be inpatient. You can contact Dr. Puder in Boston with any questions you have here: http://www.childrenshospital.org/cfapps/research/data_admin/Site428/mainpageS428P0.html. He is very prompt and very kind. He was a pediatrician before becoming a pediatric surgeon. There is more information here about Omegaven and Short gut: http://grey.colorado.edu/shortgut/index.php/Omegaven. Also, if you don't have a lot of support you should check out http://groups.yahoo.com/group/Short-Bowel_Syndrome/.
I have been reading some of your stories and I hope that someone might be able to help us. My grandson was born at 25 weeks, he weighed 2 lbs. 1 oz. after 4 weeks he came down with NEC and lost 70% of his intestines. He has not been on TPN for about a year now. He had surgery number 11 in July and since then he has been losing weight. We have tried everything.
His stools are so watery that we use plastic bags under him so it does not get all over. Now the poor little guy does not sleep. He wakes up at around 2 a.m. and screams along with thrashing around. He goes back to Riley's next week and hopefully do bloodwork to find out if there is something else going on. Right now he only weighs 18.4 lbs. Is this normal?
My granddaughter has short bowel syndrome is now two months old and is battling fungal menigitis (meningitis) in the hospital. I am curious if any other children with SBS developed menigitis (meningitis) as a result of Central line infections or for some other reason during their early stages with SBS?
HI MY NAME IS CAROLENA SANCHEZ AND I TOO WAS BORN WITH SGS I WAS BORN 6MONTHS 2 WEEKS EARLY WEIGHING ONLY A 1LB 1/2 I SPENT THE FIRST YR AND 7 DAYS OF MY LIFE IN THE HOSPITAL BEFORE MY PARENTS EVER GOT TO BRING ME HOME FOR THE FIRST TIME I HAVE HAD 27 SURGERIES AND IM NOW 18YRS OF AGE , I JUST WANT TO LET ALL THE PARENTS OUT THERE KNOW THAT THERE IS HOPE EVERYDAY OF MY LIFE MY PARENTS WERE TOLD I WASENT GOING TO MAKE IT THREW THE NIGHT BUT HERE I AM ( THANKS TO GOD ) IF ANY OF YOU HAVE ANY QUESTIONS OR CONCERNS PLEASE FEEL FREE TO CONTACT ME @ ***@**** ( ALL FAMILIES AND CHILDREN WILL BE IN MY THOUGHTS AND PRAYERS : ) WHERE THERE'S A WILL THERE'S A WAY!!!!!!!!!!!!!!!!!!!
I was also born wits Short Bowel Syndrome....I am now 17 years old...I was born October 14,1993, but what surprised me today as I was doing research is that newborn infants have a low survival rate... KAYLEE AND I PROVE them WRONG!!!!! :) <3
Wow....I feel so relieved. My 15 month old also has SBS. Feb. 4, 2011, it snowed in Central Texas (a rare occurence) so I just happen to be at home with him. We played in the snow that morning, around 1 he started crying and whaling..I really thought he had an ear infection, since he had a little cold (the Dr said a few days before) I gave him some Tylenol and he calmed down a little, so I placed him in his crib to get dressed, it was Friday and he needed some antibiotics, he was still crying but calmer so I jumped in shower,, that gut feeling something is wrong took over. I went to his room and found him whimpering, extremely pale, cool to the touch and blue around his lips. He had a deer in the head light look to him. I called 911, the operator could hear him in my arms whimpering said an ambulance should be there shortly and hung up. Call back if he quits breathing...REALLY. The ambulance/fire truck/police come and questioned me like I hurt him and My kid is getting worse and your doing nothing. He was 96 degrees and 90% oxygen level. They said he looks a little cyanotic, we are going to transport him. They wouldnt let me ride in the back with him, as we drove to hospital 25 miles away, no sirens going 50 in a 70 because of the snow...my mind raced. We arrive at the ER they are waiting for him, he is now 91 degrees, and the MD is upset with the ambulance crew. They began working on him allowing me to stay in the corner,...I wasnt leaving. I noticed his stomach was bloated..so I told the MD his belly doesnt look like that. Stat xray...and transported to PICU..while I waited in limbo with the chaplain. They told me it wasnt looking to good to prepare myself. The surgeons came out to tell me he needed to go surgery, his intestines look like they have tunneled or twisted, and chances are that he will not make it. I said my Goodbye and prayed like I have never prayed before. He came from the OR on a vent, septic, his bowels had a true knot, gangrene had set in. They removed 1/3 of his small intestines and ascending and 1/2 of his Transverse colon. They left him open due to some questionable bowel. Next morning back to surgery to remove more. Septic, started TPN, Acquired RSV, Metabolic acidosis.then 10 days out He was never right, lethargic, vomitting, tons of diarrhea like 14 black ones in 2 hours, started screaming again. They did a Dr. Rapid on him again, back to PICU. His bowels fell apart and he went back to surgery, They gave him an ileostomy that time. Septic again from the central line. After multiple attempts of the surgeons saying he needs to come off the TPN, saying he has enough bowels. 2 weeks of him having to be rehydrated daily, replacing his ostomy output, had lost 2 kilos now. They reluctantly gave him his TPN back after a simple test proved he wasnt absorbing, just dumping. Still saying he has SBS, but it will be resolved when they reverse his ostomy. We reversed it, Septic again from the Central line, they where making him try it on his own again. He was so weak. Dehydrating. Had one Pedi MD tell me it is normal for a toddler to only eat 1 chicken nugget a day, her dtr does it all the time and is fine. But her dtr didnt poop 20 times a day. Had to fight to get him on a NG tube for nutrition, and wow he started playing and interacting. Now we have a GTube since I fired the surgeons and got GI services to pick him up.They surgeons kept not doing the recomendations from GI. He is still having alot of diarrhea and stomach pain. Doesnt eat orally very well at all. He does still vomit a couple times a week. They say he should have enough bowel left, but obviously it doesnt work right because is still so symptomatic. We have been home from the hospital for 5 weeks, been to 4 MD appts. They have done no labs. He is anemic and takes an Poly vi sol with Iron, prevacid, immodium 3 times a day. He is on ELECARE 1000 ml daily. He has 7-10 BM a day still. I dont feel that this hospital has much experience with SBS. Basically, anyone know where I should take him for better management....He is a happy little guy, and is beginning to walk. I just want the best for him...and I feel that we get blowed off all the time when we ask if he needs labs or what should I expect. He is the 75th percentile for height and the 3% on weight. Sorry my writing is random, but we had this for 5 months now and I am just trying to figure out what to do..where to go...Thanks for reading and letting me vent...lol. May the lord watch over each of our children and give you and me the strength, courage and wisdom to care for our children.
yes I have heard of this I have a daughter who is 7 she was born at 27 weeks and had her bowel removed after being born addicted to meth and crank when I adopted her at 9 mos I was told she had 3 mos to live well she is now going to school she has a gtube but a small price to pay after years of tpn.
yes I have heard of this I have a daughter who is 7 she was born at 27 weeks and had her bowel removed after being born addicted to meth and crank when I adopted her at 9 mos I was told she had 3 mos to live well she is now going to school she has a gtube but a small price to pay after years of tpn.
If your child has short gut syndrome and you are looking for a wonderful place to take your child with topnotch team of experts It is called the intestinal rehab clinic at the university of nebraska the number is 1-402-559-4000 ask for the irp clinic and asked for brandy she is the nurse coordinator for this program I have had this clinic treating my daughter for 5 years and she has went from having 3 mos to live to a fulltime little girl in grade 1
hi my name is sasha am 25 am from the bahamas.i had my second child on october 12th 2012 and he and his guts was twist so he left wit 2/3 of his guts so now the doctor told me to read up on SHORT GUTS SYNDROME.He was in icu and now in da children wards.So if its ok i want to know how to deal wit a baby wit dis syndrome.you can write me bk
I know you posted this years ago but my daughter has short gut her bowels died when shed was still in my tummy she had 11cm of bowel after the 1st surgery then she had the step and now she has 17cm she was in the hospital the first 14ms of her life she's 2 now and we be home a year in February but we have be in out sence she has been discharged she is on ton and tube feeds and has a central line.. is your daughter is on ton and tube feeds id not how long did it take to be off all the way and has the pooping slowed down at all?
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