Gastroschisis

My Grandaughter was born  with  scary birth defect and lost all of her intestines but seven inches. We were told she might not live a month. But God blessed us and now she is 16 months old. She is on Tpn therapy, and she also gets Omegavin from Germany. It has not been approved by FDA here in the states yet. She can’t eat because of the lack of a stomach. She throws up a lot. But she is the happiest baby you could ever meet. Please if there is anyone else out there that knows something about  life span for this , Please contact me at iaabac1@aol.com Thank you Shelia

My daughter was born on 23th july 2008 with gastrochisis and was doing well .But now they say she is not doing aswell as they expected her to do at this stage ,they are now saying that she will need a dye put in to she if there is a blockage as she is’nt takin the amount of milk as they would like her to and have now put her back on TPN and lowered her milk to 8ml every hour as she keeps being sick at  times after feeds. has anyone went throu the same process as were going throu….

Hi there,

My name is Nicole and Im 22 years old. I was born in 1986 with Gastroschisis, the defect was unknown to my parents or there physcians untill I was born. I had kinda a ruff childhood with being sick alot but not alot related to gastric functions untill about the age of 17, about then is when I started having problems with digestion,pain, bloating,constipation, all these really awefull, painfull, and uncomfortable things.  I felt like it would take my gut days and days to process anything properly, and that it was never doing a good job of it.   Soooo I saw a couple of physcians about my concerns and obtained the medical records and operative report from the day I was born as sort of a guide to what really “went down” on the day.  Come to find out that I had a defect with the stomach, pancreas, duodenum, colon, and the small and large bowel, all outside the abdominal cavity.  I gave this information to my physcian and they did some tests like a barium swollow to make sure the malroation of the bowel had been corected properly and there were no other internal concerns. the study showed that everything did indeed work “satifactory” was the word they used, but that it just took forever. They did say they belived there were some fair amount of abdominal adheasions that could be causing all these types of symptoms to come and go, and recomended plastic surgery to revise the scar and to take a look at the adheasions.  So I had that done when I was 18 and I felt a little relief after the surgery but not much. So now I’m 22 and still dont feel just right, I believe Ive done what I can and wonder if there is anyone else out there like me who has experienced these same types of issues with this defect later on in there life.  I feel strange not knowing whats going on inside of me it dosent feel like I think it should, and Im sick of being obbsessed about it !?!? I do watch what I eat and excersize regularly but nothing seems to help, ive seen at least 5 doctors  and they tell me that everything should be fine.. but it dosent feel fine !!

Is there anyone out there like me ??

Hello all,

My name is Tracy and it is nice to see a supportive site such as this for gastroschisis. I was born on May 20, 1978 with this unfortunate issue. I am now 30 years old and very healthy! I wanted to write to let all of those parents out there know that your child can live a healthy life. I have a beautiful daughter that was born with no problems at all. Chloe is healthy and there was no sign of any issues during pregnancy or at birth.

Because my gastro was so long ago, I have a large 1 inch deep scar that runs from my breast-bone to my pelvis. The scar has always been a sort of medal for me and although babies today will have a belly button and very little scaring…still be supportive. My parents were wonderful at letting me know that I was unique and that was special. I remember as a young girl showing my friends my “cool” difference.

God bless all of the parents going through this now. Your babies are beautiful and it takes special people to deal with an issue like Gastroschisis. However, your babies can live full lives! The only issues I’ve had are blockages a couple of times in my life. I was 14 the first time a blockage snuck upon me and 26 the second.

I hope I haven’t bothered all of you with the fact that I’ve told my life story…but I know how worried I was thinking my child would have this. I can’t imagine how scared the parents of babies with this abnormality are. I’m sure every parent is scared for their future and the here and now. Feel free to ask any questions! I am very open about it.

Have a blessed week!

Tracy

I found out at 12 weeks pregnant that harry had gastroschisis and then the roller coaster of emotions started . Trying not to worry was hard every day i cryed and it really took its toll on mine and my partners realationship, Being happy that i was pregnant but allso the unsertantiey of whever harry would survive. From the 12 week scan i was sent to st mary’s hospital Manchester 3 days later were i had another scan at this point it was  explained to me about gastroschisis and what would happen through - out my pregnancy . The Doctors at st Mary’s were helpful and frank they were straight to the point and did not give any false hope . They simplyy told me every gastroschisis baby is different. On the 8th July i was induced at st Mary’s the birth was extreamly quick and Harry was born at 6lbs i saw harry for a few seconds and then he was taken up to special care. Shortly after i was brought pictures of harry and spoken to by the surgeon . The surgeon told me and Jordan that harry bowl was completely out it had a skin around it so they did not know if it was alive and that harry was on the survive end. They explained to me that he would be going to theater that day to put the bowl in a silo bag in a attempt to get the bowl back in . Day by day the bowl went back in and when harry was a week old the bowl was back inside his body. Harry stomach went softer and he was started to be given some milk see sawing we the tpn . When in hospital harry got an infection in his line however this is not uncommon . At just under 4 weeks old Harry was discharged . Harry is still having the occasional wash out but it is not uncommon for babies with this condition. I am now just hoping that he stays strong and keeps well.

“A long journey, many bumps, many problems.. it was a long wait, but totally worth it..”

I’m seventeen years old and just less than a week after my 17th birthday I found out I was pregnant, on December 13th, 2007. I was surprised. Shocked mostly. The hardest part was telling my parents and everyone else. I was scared for my life because I didn’t know what I would do and I didn’t know how to take care of a child, even a baby. But I didn’t think anything else would be worse than be pregnant at 17 and I also didn’t think there would be anything more harder than telling my parents about it. But, on March 2nd, 2008 I found out at my Ultrasound that there was something wrong with my baby. They found “abnormalities” in my blood, a lot of TPN. They told me that there was either a problem with the baby, I was having twins, or I lost her. When we had the Ultrasound, that’s when we found out. My baby had Gastroschisis. We saw her little intestines out floating by her belly button.. I was scared, and unsure about what I was just told. I was confused, upset, mad and frustrated.. Everything started going downhill from there. Just a month before I found this out, me and my boyfriend broke up. Too many problems in the relationship, he wasn’t ready and he decided it was best for him to leave me. I was left with nothing but hoping for this baby to come out strong.. she was the only thing that was keeping me going, staying in school and keeping a part-time job on the side.

After being 6 months pregnant, my boyfriend and I finally started working things out and slowly got used to me being pregnant and prepared ourselves for this baby to come. On July 18, I was called to come in to be induced. I was sent home after a few hours and started getting contractions, but they stopped. Then on July 21, I was called to come back to get induced again, but no contractions and was sent home again. Finally, on July 23, I was called to get induced for sure. I had really harsh contractions and stayed the night in the hospital but they stopped around 2 the next morning. On July 24, they decided to put an IV in my arm to make the contractions come faster. About 4-5 hours passed and the contractions started to come, not so bad. But when from 6-8:40 the contractions got too much for me that I had to take Epidural for the pain and was fine for the next few hours. On the morning of July 25, I started to feel the contractions and the pressure. From the 23rd to 25th, I dilated from 1 to 2 to 3 to 5 to 6-7 then to 9. By 6 in the morning I couldn’t take it anymore and the doctor told me it was almost time and to let her know when I needed to push. I kept complaining that it hurt and the contractions were getting worse, and they realized that it wasn’t the contractions but it was actually her coming already.

Then it happened. 37 weeks, 6 days, July 25th, 2008, 7:50AM, 6 lbs. 13 oz. A baby girl was born. I saw her for a second and then she was sent to the next room to cover her bowel and intestines. An hour later I was able to see her before they brought her to the NICU. She didn’t need any breathing tubes, she was breathing all on her own. All I saw was the top of her head and part of her face, and one of her eyes open. I got to touch her head, but I didn’t get to see her look at me or kiss her face. I was still too weak to move and I was lying on a bed right above her head. The surgeons told us they weren’t sure how long it would take to put back her bowel and intestines, it would either take one surgery or two. Then she was sent to the NICU.

Around 7PM that same day, my boyfriend and I went to see her. We didn’t think they finished her surgery because they said they would do it later that night. But when we saw her, she had no intestines out, nothing. They told us that one surgery was a success and it was all inside her. What a relief! She was just resting and recovering.

On July 26, we went to see her again before I finally left the hospital. She was really swollen and looked in so much pain. She had a needle in her head, on her arm, her leg, so many wires.. It was so painful to watch and I couldn’t stand watching. They were telling us how it all depended on her recovery and it was all up to her to stay strong and fight while they helped with more fluids and everything else..

Today, July 27, we went to see her again. And this time, she looked so much better! The needle in her head was gone, the swelling went down to minimum and they slowly took away some fluids. They said she was doing better and she’s doing good. I finally got to touch her for the second time, this time I got to feel her head, her cheeks, her arms, legs, feet, tummy, everything. I saw her eyes open, and then one of them opened just looking at me. I knew she was fighting to open her eyes after being so swollen, and she finally did for a short amount of time to look at me and her dad.

Honestly, this baby is a blessing, a miracle. They fight so hard and stay so strong just to stay here with us. I was worried for over 4 months about her Gastroschisis, but after only 2 days, I’m so relieved that she’s so strong. The doctors and surgeons these days are amazing. I just know everything is going to be fine, and things will always be fine when you pray and have faith.

“It was ALL worth it, and we’re going to stay strong.. just like her.”

Our granddaughter was born at 37 weeks (induced) on July 22, 2008 with her liver outside of her body along with the gastroschisis.  She also has a cleft lip and palate.  She weighed 4 lbs 15 ozs and is 17 3/4 inches long.  I have read the post on here and am encouraged about the gastroschisis.

My question is, does anyone know of anyone born with the liver outside of the body also.  This really concerns us.  The doctors told us they handled it as delicately and as little as possible.  They placed it along with the gastroschisis in the silo.  I guess it is a wait and see game at this point and I know it has only been a couple of days since she has been born, but I was trying to get any information I could.  Please help if you have in any information I would appreciate it.

Hi Everyone,

My wife and I have been reading this website for sometime. Whether we were looking for answers or empathy we have found this place to be an extraordinary service. We have an unborn daughter with Gastroschisis who is scheduled to be induced in August. I’ve decided after a considerable amount of thought to post our experiences online via a blog. I’m a novice, so please forgive me for any lack of technological know-how. I hope to share our experiences in order to help the community of all those who are affected by this birth defect. Please visit it at:

http://babyonboard-dh.blogspot.com/

I hope to make an entry every day until induction as well as detailing our experience after her birth in the NICU. I welcome you all.

Thank you,

Devlin & Ashley

The latest posts from Emma`s blog;

Wednesday - Wed, 27 Aug 2008
Emma has surgery on Friday. The goal is to close the half-dollar sized hole in her belly. She refused to sleep last night. She's now 8 days old and starting to act more like a fussy little baby than someone who is in great pain. I held her pacifier for nearly 2 hours last night trying to help her go to sleep. She's too strong willed for that. She's had a go at pulling out virtually all of her wires and succeeded. That's our girl. I left around 230 am and Ashley took over at 4.

I feel like I've been awake for 8 days. Sunrise and sunset are suggestions of the passing time, but the moment since induction is continuous. The ward is filled with tiny lives, barely begun, having to fight for a world that most take for granted. Outside the hospital, the streets are busy. Drivers cut off pedestrians to futilely capture a few more hurried seconds that are lost in their memory once they arrive at their destinations. This is a life, unrealized by its victim, that is governed by a checklist: eat dinner, read email, and watch television. The seduction to do without thought is omnipresent in our culture. It is a sedative for the peripheral fears that reside within its host. Inside the hospital, the children in the ward did not ask for their burden, but they assume it with the courage and determination that sleeps in us all.

A baby in the corner of Emma's room won't make it. The doctor said she is, "waiting to die". She weighs barely a pound. She is never visited. She carries with her the corporeal limits of a body and mind unable to escape the boundaries of human existence. I need to apologize to her. I am sorry baby girl, on behalf of all of the hours wasted in this world that deserve a better home in your hands. I hope that in your rest you dream of the love that is and not of a love that will never come to be. Today is your day. For everyone else, they call it Wednesday - just another day.

Monday, August 25th - Mon, 25 Aug 2008
Emma had another rough night. She changed rooms to accommodate another high risk baby, but we feel it ended up being for the best. Her new nurses are providing great care and attention. She was breathing well last night around 1am, but started to have weezing and labored breath at 3am. The nurse did a chest x-ray, which turned out negative, and assessed her status. I stepped out at 3am for a coffee, but the cafeteria had already closed. I thought there was a vending machine in the basement, so I took the elevator. No vending machine. I ended up getting stuck because the elevator would only go to the 1st floor (of course, I didn't know that, so I pressed buttons for minutes without result. Luckily a custodian let me in on the secret after 5 minutes on my own. Never crossed my mind to take the damn stairs!)

They increased her o2 level. She also may have some swelling in her lungs, but we'll see. She's had a few lucid moments in between being asleep and writhing in pain. They are moments like being in the eye of a hurricane. A time to rest, reflect, and prepare again.

Sunday Evening, August 24th - Sun, 24 Aug 2008
I can't thank everyone enough who are involved in our family's experience. We are so grateful for the outpouring of support for those that are affected by Emma's story, whether gastroschisis has touched their family or others that they love. I apologize if I'm not able to respond to your comments, but between caring for Ava and Emma there isn't any time to sleep let alone do a blog entry. Please continue to comment and email my wife and I as our community tries to make sense of gastroschisis.



Emma has had a real rough time lately. She's on oxygen and the nurses say she has a heart murmur, but it may go away in the next few days. She's also losing weight. She's at 5lbs 3ozs now (6lbs when she was born). Apparently it's not unusual for gastroschisis babies to lose weight, but they are still concerned. I was with her until 2am last night and Ashley went in around 3am. I just came back from the hospital on a 2pm to 6pm shift. Her breathing has been slow, but deep. It's dinner time and then I imagine Ashley will head in again. One day at a time, right?

Dinner time - Sat, 23 Aug 2008
Emma continues to have labored breathing. She's making a weezing sound and works hard for air. Despite the obstacles, she is getting enough oxygen and her bowel condition is improving.



Here she is with her many wires. I'm starting to think they're trying to turn her into a radio antenna. Ashley typed up a girly name tag for her and placed it on the end of her bed. The surgeon said she may only need to be reduced two more times, likely by Monday, and then it's time for her next scheduled surgery.

A new baby arrived from Alamance county last night. He was born with a large tumor on the left side of his face. The ultrasound technician had no idea that the tumor was there, so when the mom gave birth she had no idea either.

Saturday - Sat, 23 Aug 2008
Off to the hospital. Emma is has stopped breathing a few times. Mom is there and grandma is on the way to watch Ava for us. The bowel is putting pressure on Emma's diaphragm which in turn put pressure on her lungs. Her heartrate is very high as she tries to keep up.

My never ending web research into Gastroschisis has thrown up some interesting discoveries recently.  For example the first known case of Gastroschisis was reportedly in 1733.

“Before children’s hospitals were conceived, Calder, in 1733 reported from Glasgow two neonates⁶: one with gastroschisis, a malformation that has become more common in the last 30 years; and the other an infant with an unusual duodenal duplication.”

Source

Unfortunately the citation does not divulge too much information other then that which i have quoted.

The first known survival from the condition was in 1878.

“one of the first reported survivals of an infant with gastroschisis was published by William Fear of England in 1878″

Source

The early processes of treating Gastroschisis.

“Since the introduction of a preformed silo to the authors’ practice in 1997, there has been a decrease in primary closure of gastroschisis. To clarify the impact of this change, the authors reviewed their results over the past 10 years”

Source

These are my latest findings (although some of the articles are dated) i will post more as i find them.   There seems to be an unending question right now in my mind, often there is research into links with the mother, everything from over the counter drugs to lifestyle, but what about the dads?  A question arose.

Hello, I thought i would join this website as i wondered if there were other people registered on here with the condition……. I was reading some of the other posts saying how people have found out in advance about their baby having the condition and how worried they are about how they will live a normal life or the size they will grow to.

I am just letting people know there is nothing to worry about as i was born with no warning to my parents that i had gastroschisis, as technology wasnt quite as good in 1983/1984 as it is now and the doctors assumed that i was a just a boy not that i had any medical condition. I was born 3 months prem and weighed 5lbs droping to 1.5lbs after one week. Not to worry though as this is sometimes normal.

I spent 3.5 months in hospital and had an amzing surgeon he pionnerd the surgery that they use today with babies that are born with the condition. I have lived a normal life i am happy and healthy i am now 5ft 9inc and weigh a normal weight and have never had anything hold me back. My parents decided for me not to have plastic surgery to cover my scars and decided it was my desicion. I chose not to have the op and think that my scars are part of me and who i am.

I hope i haven`t bored you and hope that i have settled any fears over small babies and people not leading a normal life when you are born with gastorschisis.