Gastroscesis - Anyone Experienced It?

[BearHitch]

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...

[peekawho]

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.

[BearHitch]

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

[peekawho]

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?  

[BearHitch]

What is a CS?

[peekawho]

C/Section.

[farrahh27]

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.

[BearHitch]

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.  

[Nicki1433]

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.

[AMartin5]

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

[AMartin5]

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

[jmbull85]

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!

[MiracleBabe]

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