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Gastroscesis - Anyone Experienced It?
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Gastroscesis - Anyone Experienced It?

A few weeks ago, my baby was diagnosed with gastroscesis via ultrasounds (where the stomach does not completely close and so the intestines protrude).  I was just wondering if anyone else had a baby who had this or knew someone who did.  I was curious how long their baby was in NICU for after the surgery, how many weeks they were when they delivered and how much of a doctor bill they took home.  I know it all varies on so many different things, but I read that these babies spend an average of 41 days in NICU and have a $156,000 bill after insurance.  Also, I hear contradicting opinions from my doctors (I have a high risk team, I don't have just one which I hate!) about delivery- some say that babies with this usually deliver earlier, like 35-36 weeks, and others say this is not true.  I just want to hear from some ladies on here about real experience since none of them seem to know what they are talking about!  Thanks in advance...
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The few I've seen were delivered near term.  I think one was delivered early, because of ultrasonic evidence of a bowel obstruction in utero.  

I'm sorry I don't have a lot else to offer, since we don't have anything to do with them once they are delivered and go to NICU.  

You might try calling your NICU and trying to talk to a sympathetic nurse about what the usual course of care is.  You can also ask (via your high risk docs) for a consult with a neonatologist to discuss the things you might expect.  

Best of luck.  Keep us posted.
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Thanks!  Well, I do have an appointment tomorrow with ped surgeons and the neonatal unit.  I was just wondering of others personal experience with it - I guess I was hoping for some success stories, as I was told 8 out of 10 babies have no problems but it can be fatal... and I've been in small stats before  :S
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The few I can recall ultimately did well, but I can't tell you anything about exactly what happened to them during or after their surgeries.

I'm sure there are plenty of sucess stories, but as it isn't a common problem, you might not see anyone here who has personal experience with it.

Are they going to do a C/S?  
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What is a CS?
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C/Section.
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A friend of mine had a son with this. She had a planned C-section. He went into surgery right away and had his bowels surgically put tucked in. He had no problems. He still has a scar. He is 9 years old now. He is a picky eater, but not because of the gastroscesis. Never had any trouble with his bowels either.
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Thanks for the story- no I do not have to have a C-section unless for some other reason, like if the baby was breach or something.  They haven't found that a C-section helps at all, and with my first, I'd prefer to do a vaginal delivery anyway, so I was relieved when I found out I wouldn't have to do that.  
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A little girl that was next to my son in the NICU was born with gastroscesis.  She was born at 33 weeks.  She was in the NICU for 4 weeks.  They didn't take home hardly any of the bill (in the hundreds).  She is doing great now!

My sister-in-law is a NICU nurse and recently had a baby with severe severe gastroscesis and that baby was not able to ever eat on his own and eventually (after 1 year old they sent him home from NICU) he did pass.
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My granddaughter was born with gastroscesis, she will be 3 years old in February. Savanah was born c-section at a month before she was due. She went into surgery immediately after her delivery to place her intestines in their proper place in her body. She stayed in the hospital for 2 weeks after her delivery. We were told she would not have a normal looking belly button, and at almost 3 years old it is obvious that her belly button is not as pronounced as most. She suffered a hernia at 6 months, but a quick surgery took care of that. At 2 years old she suddenly began vomiting, which is something we are told needs to be carefully considered due to a possible blockage in the intestines. She was hospitalized for a week, thankfully the blockage cleared and she was sent home. We keep a close eye on any changes in her bowels or digestion but for the most part she is a lively, smart girl.
I wish you all the best
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My granddaughter was born with gastroscesis, she will be 3 years old in February. Savanah was born c-section at a month before she was due. She went into surgery immediately after her delivery to place her intestines in their proper place in her body. She stayed in the hospital for 2 weeks after her delivery. We were told she would not have a normal looking belly button, and at almost 3 years old it is obvious that her belly button is not as pronounced as most. She suffered a hernia at 6 months, but a quick surgery took care of that. At 2 years old she suddenly began vomiting, which is something we are told needs to be carefully considered due to a possible blockage in the intestines. She was hospitalized for a week, thankfully the blockage cleared and she was sent home. We keep a close eye on any changes in her bowels or digestion but for the most part she is a lively, smart girl.
I wish you all the best
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my son was born 22 years ago with gastroscesis.  I hadn't had a ultralsound, so we had no idea there would be a problem delivery.  He was transferred to a nnu right away.  He has several surgeries to gradually put his intestines back into his stomach.  He spent 5 wks & a few day in the nnu.  He was home for 2 wks & went back in with a hernia. After that he began to grow.  He has a large scar down his stomach & no belly button, but he has been a healthy boy & able to do everything normally..He was a 4X state champ  wrestler also.  We are very thankful!
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Hi BearHitch. I was born with Gastroscesis and I've only had 1 surgery prior to my first at birth. I think that I was a lucky child and that my scars make me who I am. It still makes me sad that other babies have to go through this just like me because it isn't fun for the parents or the child. I'm 15 and I'm turning 16 in August. That makes 16 years ago when I had my first surgery and 5 years since I had my second surgery. I just want to tell you and everyone that you can live through it and that anyone can do anything if they put their minds to it. I pushed through my second surgery and even though I might not have made it I had my family there and I couldn't leave them alone. I have to be the strong one in my family. If they didn't have me then I think my mom would go completly crazy. See, I have two little brothers and my dad is in the army fighting over seas. My mom needs me and that is the main reason I lived during my surgery. I think that the other reason I lived is because God has a plan for me and i want to live long enough to find out what it is. I'm sorry I talked your ear off but sometimes you have to tell someone. Thanks for reading.            MiracleBabe
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Hi, I was one of those that was born with gastroscesis, I am now 30 years old.  I have had four babies, 3 boys and 1 girl.  I don't know much about my birth, but I do know that I wasn't supposed to live.  I have no belly button, there's a big ugly scar on my tummy that I hate, but I'm here.  My parents were Jehovah Witnesses and blood was not an option when the doctors did my surgery, but the courts took me and gave me blood transfusions anyway.  I was in and out of the hospital and my parents say that I am a miracle.  I'm thankful I'm alive, but now I can't get ahold of any of my birth records.  So, if anyone knows how to do that without the hospital's help, please let me know.  Thank you for reading.                           Naz
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My son was born almost 10 years ago with this condition.  He was in NICU for 6 weeks.  His was in stage 2 (of 3) so he only had to have one surgery to repair the problem and put his small intestine, large intestine, colon and liver back inside.  He's had to have at least one surgery per year since then to repair inguinal hernias caused by the intestines packed in and blockages in them.  He has a very tempermental stomach and we have to watch his diet.  He will be on Muralax for the rest of his life (according to his pediatrician) to help keep the chance of blockages down.  His surgeon used extra skin during his first surgery to create a belly button of sorts but as he grew, it came "untucked" and now he sorta has just a thumb like appendage there.  He has a 2" scar extending above that area and faint stitch marks on his chest where the tubes were connected at birth and a small hole and scar in his neck where a larger tube was inserted at birth.  We've been told that his surgeries and stomach problems will probably subside somewhat by the time he reaches age 12 and his torso lengthens in puberty.  Other than that, he's a happy, healthy 9 year old (10 in August).  I'm glad that the doctors minimized for me what we'd be facing when he was born.  If I knew then what I know now, I'd probably been scared to death.  
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I had a lil boy with the same condition your child has... I delivered my son at 35 weeks..... he was doing very well after the two surgerys.... I did lose my son 27 days after birth... as for the medical bill it is very expensive but If the child survives it is well worth the money you have to pay.... Good luck and We will pray for your child everyday
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When i was pregnent with my son in 2004 he was diagnosed with Gastroscesis at 16 weeks and i went almost full term, i also delivered vaginaly. He was healthy but they had to put him on a ventilator for 2 weeks through his procedures and surgury (until they got all of his intestines back in him and then repaired the hole). he was on lots of meds and he had a hard time learning to eat because he was being fed through an IV but after we got him eating he did very well despite a bad infection in his intestines. he was released from the hospital at 8 weeks. we are now facing some problems with speech and a sensory disorder  that may or may not be linked to his meds and nicu stay. he also didnt receive his vaccinations until we brought him home and his pedi gave him what i beleive to be large doses at 2 months to catch him up which we are now finding out is linked to autism and he falls close to that spectrum but he is a lively little guy turning 3 this month and only has a 2 inch scar and half of a belly button.  good luck to all that come across this defect.      Bubbasmama
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oh and continued from above- this is considered a birth defect and the state will at times cover these bills along with therapys, speak with a social worker at your hospital to find out more but between my husbands insurance and CCS Califonia Childrens Services we only paid $800 total.
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I am a NICU nurse and deal with these kids on a regular basis, they are normally born close to term and typically do very well...the length of the hospital stay is a result of working up on feedings to an amount that your child will be able to grow on...this is typically done VERY slowly at first, and more rapidly once the docs are sure that the intestines are functioning properly with no blockage. As for the bill, the above person is correct...as this is considered a birth defect, state funds are available to cover part of the cost, however you do have to ask for this help and get started with the paperwork about the moment your child is born...which is exactly what you'll want to be doing while your child is sick right? As long as there are no other complications you should be (relatively) in and out...I've seen these kiddos go home in as little as 2 weeks....and with many a complication...as long as 24 weeks. Keep your fingers crossed you're not in the later group...and ASK questions!!! You're neonatologists, NNP's, and nursing staff should be more than willing to fill you in on any information you need...and take everything you google that doesn't come from a peer reviewed medical journal with a grain of salt. There's a lot of intimidating information out there that's just not truthful.
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Hello Everyone, My daughter Sophie is 10 months old now and she was born with gastrocesis. We did not know of her condition before birth so this was a big shock when she was born.. She was immediently life flighted to the childrens hospital (Saint Francis). From the time of birth they told us there was a big chance she would not make it.. however she went into immedient surgury in Saint Francis were they awesom surgeon put her little intestines, overy and stomach all back in in one surgury..we our very lucky this took one surgury and the scar is so small you dont even notice it.. The surgeon was wonderful and very caring..They had told us that she would probly be in the NICU for 3 months however she went 2 weeks without and food only through the IV in her head and on the 3rd week she healed so fast she could try a bottle and that went well and after 3 weeks in the hospital Sophie was on her way home what a Miracle the doctors were amazed that she recovered so quickly....At birth she weighted under 5 pounds and was 16 1/2 inches long now 10 months later she weighs 22lbs and is 30 inches long she has come along way she is healthy as ever and since the day we left Saint Francis thank god she has had no problems at all..Brittany
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hi my name is shannon and my first daughter was born with gastrocesis. I was eightteen at the time and my husband was 21, it has been almost 9 years now. Im not here to tell you my storie unless you want to know it. Im here to let you know that if you want my opinon i will give it. Dont beleive everything you here or read because every case is different and every baby is different my daughter was born at 37 weeks she weight 6lb 5 oz i delivered her normal. the doctors told me that she would be born around 34 to 36 weeks and she would only be 4lbs. but man were they surprised when she was born. they also told me that she had a 95% chance of survival and 5% chance of non. as for the doctor bill i cant help you with that I do know that for her to be born and all of her surgeries the hospital bill was 45,000. but we were military so not sure what it would cost somone non military. if you would like to know more just email me back and good luck dont stress out just cherish everymoment you have with your baby sweat the small stuff later. god bless
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my name is jessica and i am 20 years old and i was also born with this condition...I'm here to say that i am very healthy and i have had one complete term pregnancy to witch i had a c-section to have my son who is now 21 months and he was born 9 lbs 4 oz and is very healthy and active as can be. the only down side to this surgery is the ugly scar after the procedure...my scar is on my stomach where my bellybutton should be and is about the size of a half dollar and my stiches are still visible!!!
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hi. i am shocked to see so many people with this problem.My little girl was delivered 4 weeks early and is now nearly 7 yrs old and doing fine. She was the first to have her procedure done manually and using the umbilical cord to naturally seal the hole.She now has a normal looking bellybutton except for a sdlight hernier witch developed not so long ago.She has anual checkups at rbch with dr kimble who did her procedure.I believe dr kimble needs a medal for all his great work in all areas of the childrens hospital.My little girl says she has a princess bellybutton and is very proud of it.
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This was so long ago - its neat to see the post resurface!  

Happymum - Thanks for your post!  DS is now 16 months and is doing wonderful.  They also used the umbilical cord to seal the hole and he had his surgery done right after birth within a  matter of 5 minutes (they attributed this to the fact he was MUCH larger than they had predicted!).  His belly button still sticks out quite a bit, but the doctors told me it wouldn't need attention until he got older if it didn't go away, primarily for cosmetic reasons.  He hasn't had any follow-ups on the conditions, just a few other birth defects that he was born with.  We are pregnant with #2 and anxious for the next ultrasound to make sure this baby doesn't have it too.
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Hi I was born with Gastroscesis! I have just recently began researching this disease and I was amazed to find this site and to find that so many people have had this problem! I am 14 now and other then a scar on my stomach I have had no health problems relating to my Gastroscesis in years. I was born a month in a half premature so I wasn't totally able to develop and that is what has been the main cause of many of my health problems. To answer your question I was only in the ICU for a little over a week. This is only because I was lucky enough to be born in Tucson Arizona where one of the original doctors to this kind of surgery was at!
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hi all, i was born with this defect, im now 21, i have no problems what so ever. born 2 week premature. in icu for 2 weeks. i have set up a facebook page called  'i was born with gastroscesis' please feel free to join. i am interested to find out what other peoples scars look like. i dont know if mine are really gd or quite bad. ive never known ne differnt, and ive never seen any one elses. please add your pics also cheers
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Now this is a long story, but to keep it brief, I had a daughter born with gastroscesis! She was born 5 weeks early! You will more likely to have a c-section, but you can also push for a natural birth! Make sure to be close to the place you are supposed to deliver due to gastro babies being early. From delivery to final surgery is about a week! Intestines will be held up in a bag under heater lamp incubator attatched to baby of course! Day by day doctors will push a little more into he/she as well as gravity doing its thing! Your baby will need oxygen after surgery (surgery approx 45 min if everything goes alright) and possibly be put into an ancomotoast state for a couple days due to painless healing process! Its scary, but its for the best! Your baby will be hooked up all over with IV's, repogles in and out of her moth and nose! My daughter stayed in the hospital for 44 days! Thats about avg. They are given morphine for pain, but beware of the morphine happy  nurses due to "doctors orders"; they mean well, but if the baby makes a peep....let the baby be a baby for goodness sakes! You have as much say so a the doctors, so do your research on any options and decisions that they "feel is best" for YOUR child...Its your child...SPEAK UP! Keep on breastpumping..they will store it all...the baby wont be a ble to eat for the first week in a half of delivery and once he/she does...it wont be very much to start out with! The milk you pump, you will be able to take home with you to store in freezer, so keep pumping! My daughters scar is about an inch long! Its a staight line thats in place of belly button....but theyre perfect :) Good luck, stay strong...and know that theyre are many cases out there like your babies...and many way off worse!! Have pece in your mind, heart and soul and know all is going to be ok!
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Hi my son was born in 2001 at the Mater Hospital in Brisbane QLD Australia.  He spent 1 week in the ICU and 2 and a half weeks in the special care unit.  He has just turned 8 and still to date has NEVER had surgery. I gave birth to him at 38 weeks naturally.  When he was delivered the nurses wrapped cling wrap around his torso and protruding intestines to protect them.  They then wrapped a blanket around him so I could hold him briefly before he went into the ICU.  He stayed there for 1 hour before starting the proceedure in the ICU.  They paralized him from neck down then they poked the protruding intestine back in through the hole it came out of, which was to the right of the umbilical cord.  They closed the hole with 1 stich, that is the only scare he has and it is in his belly button.  
His first 3 weeks spent in hospital was hard for me (and him) it was like a roller coster ride.  I was able to breast feed him once he was out of the ICU (1 week old) But that happened on and off (more off then on).  
He is doing fine now, but he does have to be sure to stay hydrated and on occassion we add MOVOCOL to his water to help with passing.  

Every child is different and this is the same for Gastroscesis babies  so dont be too hard on the doctors. I know how alone and scared you can feel.  I would love to tell you more about the roller coster ride we have been on for thr past 8 years, so if you would like talk further I am happy to do so via email, so let me know and I will give you my email address so you can contact me.  GOOD LUCK
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Hey, I am 19 and I was born with Gastroscesis. I was 3 months premature. My intestins were also out of my stomach when my mom had me. I had to have 3 surgerys for that and another surgery cause of a bowl obstruction(all surgerys at first hours of birth) I died 3 times during all of this. I stayed at Driscool in Corpus Christie for 6 months for recovery. Thats when my parents fond out about medicaide. They paid for all of the expences. I am doing fine now. I have a large scar on my abodomen; I dont have any belly button; the scar is about 6 to 8 inches long going verticaly down from the center of my pelvis up to about 3 inches away from the chest plate. I am pregnant( 10wks) they have to send me to a Genetics Center to do an  Amniosenteses to make sure my baby is ok and make sure my baby is not going to have the same problem I did at birth. I hope all of this information helped a little or maybe you can relate to the expericane. My e-mail is xxmisty_mysteryxx***@**** if you have anymore questions about anything relating to this. I am here.

Sincerly,
Felicia F.
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