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GAstroschisis


Forum: High Risk Pregnancy

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  #1  
January 15th, 2006, 10:06 PM
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Join Date: Jan 2006
Posts: 9
Hey everyone! My name is Sammi and I am new one here. I am 19 years old and 32 weeks pregnant with my first child. I am a high risk pregnancy because my unborn baby girl ( Kileigh) has a condition known as Gastroschisis. It is an opening in the abdominal wall that allows the small/large intestines to extend outside of the body. Normally the baby is taken right after delivery into surgery. I just wanted to know if there was anyone out there who has expierenced a pregnancy such as mine or knows someone with this condition. Please let me know. I am very scared and just want to mentally prepare myself as much as possible.
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  #2  
January 16th, 2006, 12:08 PM
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Join Date: Apr 2005
Location: vermont
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well i never have but my mom had my sis like that but more then that was on the out side she ended up passing away. but don't let that scare you that was a long time ago they have better stuff then they did back then. but i have see it done on tv it don't look that bad
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  #3  
January 16th, 2006, 02:30 PM
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Join Date: Oct 2005
Posts: 318
Hi Sammi,

I am very familiar with this condition. My first son was born with it. It was detected at 20 wks. They will not know how much is on the outside of the adominal wall until the baby is born. My son had an extensive amount of intestines on the outside. They did his surgery within hours. He did very well. They were able to get all of the intestines back into is adominal wall without a second surgery. If you want to know anything else please feel free to pm okay?
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  #4  
January 17th, 2006, 07:32 PM
Regular
Join Date: Jan 2006
Posts: 9
This message is for pregnant at 35! I need help I would like to talk to you about Gastroschisis and have no idea how to do so. I am new on here so I cannot quite figure it out.

Quote:
well i never have but my mom had my sis like that but more then that was on the out side she ended up passing away. but don't let that scare you that was a long time ago they have better stuff then they did back then. but i have see it done on tv it don't look that bad[/b]
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  #5  
January 20th, 2006, 04:27 PM
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Join Date: Oct 2005
Posts: 318
Hey Sammi,

You can pm me by going under my post on the bottom left hand side and clicking on that. It will send me your message directly to my private assistant. I tried to pm you , but yours is not set up to receive posts. If all else fails I can post my email if you can not get that to work. I will look for your response.
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  #6  
January 22nd, 2006, 04:07 PM
Member
Join Date: Mar 2005
Posts: 40
Quote:
Hey everyone! My name is Sammi and I am new one here. I am 19 years old and 32 weeks pregnant with my first child. I am a high risk pregnancy because my unborn baby girl ( Kileigh) has a condition known as Gastroschisis. It is an opening in the abdominal wall that allows the small/large intestines to extend outside of the body. Normally the baby is taken right after delivery into surgery. I just wanted to know if there was anyone out there who has expierenced a pregnancy such as mine or knows someone with this condition. Please let me know. I am very scared and just want to mentally prepare myself as much as possible. [/b]
When I was in nursing school, I took care of a baby with this condition. Well, the baby was 6 mon when I was taking care of her...but she was born with it and had surgeries already. For the most part, she was a perfectly normal, adorable, happy little girl....just had a scar on her tummy. Her mom was telling me about her and her care. When she was born she stayed at the hosptial for a while and when she came home, her mom had to administer her tube feedings and meds into an G-tube (tube going into the belly from the ouside of the torso). As she healed, she began taking in little bits of food normally. Eventually...she started eating more and more by bootle...and les and less through her tube...until she was eating all by bottle. Her mom was young too...16 or 17...but she learned how to feed her, change dressings and everything else her baby needed. You will learn also.
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  #7  
January 22nd, 2006, 04:28 PM
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Hi, i'm Sarah and want to let you know you and your little bean are in my prayers.

You might want to talk to Melissa_A(May 2005 Playroom) her daugher, Amelia, had the same condition. I know she also belons to another board that specifically for this condition.

Hope this helps...
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  #8  
January 22nd, 2006, 05:47 PM
Melissa_A's Avatar Platinum Supermommy
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Hi there.

My name is Melissa, the person Sarah was referring to (above). I'm sorry to have had to meet you this way, but I hope I can help you. I have a daughter Amelia who is now 9.5 months old who was born with a large gastroschisis last April. When I was about 18 weeks pregnant we had our first ultrasound and they called us back within days suspecting the condition. Shocked and scared, we went on for more tests where they confirmed it. Amelia was born 5 weeks early. I had premature labor and they were unable to stop her from coming so we delivered via c-section on April 9th. I was given the choice of c-section vs. vaginal delivery. There are no studies that show that one is better than the other. My doctors and I decided together on a c-section. She had apgar scores of 8/9! Doctors were impressed! She was taken right over to the table and fixed up and cleaned up, her instestines were put into a sterlie bag and she was put in the isolet (closed crib). They also put a tube directly into her nose immediately when she was born, the tube went to her tummy to drain out any bile so her digestive system was not functoning at all. This is called a g-tube, or an ng tube (nasogastric tube). They wheeled her past me and I was able to see her for a brief moment before they took her out of the room to the NICU to be prepped for surgery. I went to recovery and she soon went into surgery. She was tiny, she was 4lbs 4oz, the surgeon was concerned that her instestines might not fit back into her abdomen on the first surgery. What happens is, either the intestines and organs fit back in and the baby is closed up, or they have to do what is called a silo. I'll explain in a minute. Amelia went into surgery and they were able to put everything in and close her up, she had a large gastro - pretty much all of her small and large intestines, her stomach and one of her ovaries. A silo is another option to get everything back inside, what they do is they put all the intestines and organs into a sterile bag in the shape of a silo and they hang it above the baby and each day they push a little more into the baby's belly and I think it takes a few days or a week to get everything in, it's more of a gradual process using gravity to push it in. We didn't need that.

Amelia did welll after surgery and she was taken off the oxygen just a day later. She still had the ng tube in her nose, during surgery they surgically put in a catheter into her chest for feeding that would remain there until she was well enough to feed orally. Through the ng tube in her nose, everything would be drained out of her tummy so her bowel was not being used at all until they thought she was more healed. That should be about 4 weeks. (This wasn't hte case for Amelia but I'm trying to tell you what should happen in a normal case). From the tube you will see a dark green bile liquid which is drained out. The bile will be dark green at first and over time it should start to lighten up. When it starts getting lighter and almost clear in color and frothy, then they know it is time to try to take the tube out. They will take it out and see how it goes. If the baby throws up green bile several times while the tube is out, they will put the tube back in. And they will just keep trying this process until either the baby tolerates it or they feel more testing is required, abdomen xrays and scans. The catheter in the chest (sometimes it will be in a different location, it has to be fed into a main vein) is used for feeding. The baby will be "fed" a mixture called TPN - total parental nutrition - basically it is all the fats and nutrients the baby needs to survive, only it is put directly into their veins so that the digestive system is not used at all. They do not want the intestines to function at all until they are healed. My daughter needed further testing at 5 weeks and they found out that she had a blockage in her intestines. She required a 2nd surgery to remove the bowel blockage, they took out 3 centimeters of bowel and reattached the bowel where it was removed.

If the green bile runs clear, and the baby is able to tolerate no ng tube without throwing up, they will begin to try to feed very small oral feeds (food by mouth, breast milk should you choose to breastfeed, or formula if that is your option). They only give a very small amount to start, 1-2 cc's of fluid. Then if the baby tolerates that, they will continue that amount for several feeds (every 2-3 hours) and as long as baby is tolerating the feeds they will increase a very small amount over 1-2 days time. If the baby begins to vomit the feeds, sometimes they need to take a step back and put the tube back in the nose adn let the baby rest for a day or so and then begin again. It is an extremely slow process and the one day you think everything is going so well, you come back to the hospital the next day and your hopes are put down because everything has backtracked. It's just the way gastro babies work. My baby was a complicated case, she went on to have a 3rd surgery because they saw free air in her abdomen and thought that she had a hole in her intestines, the surgery showed she had what is called NEC, it's necrotizing entereocolitis (sp). It is infection of the actual bowel tissue, basically the bowel is dying. She was treated on very strong antibiotics which cleared up the infection. NEC is seen in babies with gastro, I don't think it's run of the mill with gastro, but it is seen often I believe. WE stayed for 85 days in the hospital, which like I said is much longer than anticipated, so hopefully you're baby will not be in as long. So originally the surgeon told us that the typical gastro baby is in the hospital for about 5 weeks pending any complications. I was not able to stay in the hospital with her, she was in the Neonatal Intensive Care Unit where I would go to visit each day. They were only not open to visitors for 2 hours each day, once in the morning for doctor's rounds and once in the evening for nurses change of shift. But you can check with your hospital for specifics on that. I guess let me have you ask the questions, I'm trying to cover everything to give you a brief on what to expect but I'm sure you have a ton of questions. You can pm me here or email me at mafranke7@msn.com. I hope I am allowed to post this on here, there is another forum I belong to for parents of babies with gastroschisis, and it has proved very helpful to me in dealing with this as I had never heard of it before I learned my daughter had it. The website is: http://geeps.forumsplace.com/forum-2.html&...740f338d2fd3102. It is a website based out of the UK but it has been very helpful to me. I know there are American run boards as well but I found this one to be the best. I am here for you, whatever you need I know I can help you. It is a tough process to go through, and I hope that I can help you get through with a little knowledge and ease on your mind!! You can find me on the May Playroom as well. Best wishes.
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