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282524 tn?1348489012

short gut syndrome

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?????????
95 Responses
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Avatar universal
Hi, you are not alone! My daughter is now 19 months old and was diagnosed with short bowel syndrome/short gut syndrome due to NEC. NEC destroyed apprx 200cm of her small bowel. I had my daughter at 33 weeks due to my heart failure. She got sick after she first ate and after that it seemed like a nightmare. My daughter is just like any other toddler out there!

diane.***@****
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Avatar universal
My son was born Jan 27,2011 at 28 weeks. He was doing fine 2 weeks into life he came down with Necrotizing Intercoloitis. He had to get emergency surgery,He ended up on tpn and several medications for a long time. 6 weeks after the first surgery they went to do a take down of the stoma. He did well 2 days later more of his intestine became infected again another emergency surgery. He had two surgeries in 3 days. My baby turned black and was swollen he end up on breathing moniters etcs. I thought my baby was dead. About a week or two later he begin to heal. 6 weeks later that did another take down of the stoma to reconnect him. That surgery went well,after 5 long months in the Nicu my son came home. He is now 3 years old he looks great. He does suffer from short bowel syndrome now which require B12 shots forever,vitamin d,tums and stomach medications off and on to help with runny bowels. I'm happy your daughter is okay and I have never heard of this either until my baby came down with it.
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Avatar universal
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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4238414 tn?1351530308
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
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Avatar universal
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
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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.
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282524 tn?1348489012
I HOPE ALL OF U & UR FAMILYS R DOING WELL & THANKX EVERYONE 4 UR NPUT. UR ALL N MY THOUGHTS & PRAYERS
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Avatar universal
HI MY GRANDSON IS BORN 24WEEKS AND HAS SGS HE IS DOING VERY WELL AND IS ON TPN NO FEEDING YET BUT DOING VERY WELL SO I HOPE FOR THE BEST AND I'M GLADY TO HEAR YOUR EXPERIENCES
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Avatar universal
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
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Avatar universal
sassy sanchez 18 at hot mail . com
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Avatar universal
***@****
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Avatar universal
SASSYCHICK , my email address is ***@****
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Avatar universal
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!!!!!!!!!!!!!!!!!!!
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Avatar universal
Hi
My granddaughter has short bowel syndrome is now two months old and is battling fungal menigitis in the hospital.  I am curious if any other children with SBS developed menigitis as a result of Central line infections or for some other reason during their early stages with SBS?
Nana
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Avatar universal
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?

nana
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1204573 tn?1265743250
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/.
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Avatar universal
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
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Avatar universal
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
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Avatar universal
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.


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Avatar universal
Hi Everyone,
  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.
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Avatar universal
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.

Keep fighting baby mommy is right behind you:-)


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Avatar universal
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.
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