Gastroschisis

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.

read comments (0)

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.

read comments (1)

Hello my name is Gaby. When I was about 18 weeks pregnant my AFP test came back elevated. I remember getting the phone call that something was not right. I remember sitting in my bed crying and hysterically called my husband and told him that somthing was wrong with our baby.

I had to wait 4 days, which felt like forever to see the specialist. As we sat at the dr’s office waiting to be seen, I just sat there holding his hand hoping that everything was going to be alright. My husband tried to reassure me that nothing was wrong. As we got called in I felt so scared and so helpless. They counseled us before they actually performed the ultrasound, which was even scarrier. As they performed the Ultrasound, I laid there hoping that everything would be ok, but as he said the words to us,” Let me tell you what I’m seeing…” I knew it everything was not ok.

There would begin a long journey. He told us what Gastroschisis was, but tried to reassure us that if you were going to have a birth defect, this was the best one to have.

I remember crying at the Dr’s office, this was not fair at all. I remember thinking that there are so many people that have abortions and don’t want their kids and here I am who would do anything for my kids, and now my son would be born with Gastroshcisis, it just didn’t seem fair, why me? The whole joy of my pregnancy was robbed, and it just became a constant worry.

On Feb 13. 2008 Matthew was born. He weight 5 lbs. 9oz. He was born at 38 weeks. I could not see him until the next day, but he had surgery a couple hours after he was born and he did infact need a silo. It was a very hard time for me. Who wants to see their son/duaghter go through surgery right after birth. A week later all the bowel was in they did surgery for the closure. After that it was just a waiting game. Day by day the medicines came out, the oxygen came off, and the feedings went up.

Matthew did have a set back at the hospital, but 8 weeks after he was born he was released. He is now 3 months and a half and is such a good, happy, and healthy baby. It was a very hard time for us to go through, but it made us stronger.

I don’t know why it happened, but God does everything for a reason. Matthew is growing day by day. He is such a strong baby. Anyone who would see him could not imagine what he went through. He does have a small scar on his stomach, but I’m sure he is going to be telling his story to many people during his lifetime and has the proof. Anyone reading this who is going through somthing like this, just know that there is hope, gastroschisis babies are miracle babies, they are so strong, they will put up a fight to be here with us. They are truly a blessing!

read comments (1)

i am 19 and only 20 weeks pregnant with my 1st baby. i found out in my 18wk scan my little boy has gastroschisis an i am so worried it was good to read all your stories an helped me understand a little more whats could happen and what to expect. my midwifes been through the same situation with her twins an there healthy babies now so having her experienced support helps to.

i am waiting on the hospital to contact me about the next stages, scans etc and let me know how serious it is, but if you know what hospitals are like i could be waiting a while which frustrates me because i just want know how my little soldiers gonna be! good luck to all you and your bubbies

xxx ash

read comments (1)

good everybody, my name is Michelle a mother of three months old baby boy. his name is Janmer. his name was after the month where he was born which is january and his antibiotic during his sergury meropenem.

at first i really dont know that i have a carried with me on my womb a baby with gastroschisis, i just know when the baby was born. i really felt disappointed, because with all those babies why my son? i really felt sorry with his condition. and we really spend a lot of money, at that time of my delivery my husband had only 1500php. after birth the baby was rush into the hospital for operation. and at that time i just got leave from my class. i am BEED graduating student in Capitol University in Cagayan de Oro city..

now my baby is progressing and has positive response from the operation. its just that he always has a fever.

my question is.. how to handle babies from operation of Gastroschisis, please help me….i love my son..

read comments (0)

Hi, my name is Jessica and my husband and I learned at 18 weeks pregnant that our baby had gastroschisis. They we’re unable to tell if the baby was a boy or girl due to all of the intestines and bowels in the way. Finally by amnio we found out our little baby was a girl.

They took Brooklyn 6 weeks early due to bowel dilation. She was born 4/27/01 at Baylor Dallas hospital weighing 5lbs 8oz.

She was on a vent for 1 day and spent 1 month in NICU until she could come home. Even though she has been hospitalized 7 times throughout her 6 years on this earth for pneumonia, asthma, rsv x 2 and influenza, she’s a happy, healthy, active beautiful girl.

We are currently having some issues with horrible constipation and her crying of stomach pain. She is on mirilax 1-2 times a day with not much relief. Today she had a CT scan to rule out obstruction or “kink” . She’s already had a scan a couple of years ago that showed malrotated gut and appendix up by the gallbladder but no obstruction.

This time the Dr. is more concerned because the miralax is not helping even when she was on it 3 times a day.

The CT tech came in in the middle of the scan today to call in the radiologist and said her stomach still had her breakfast in it from 7 hrs before and the barium was only through the small intestine, for her to walk around for 45mns to see if we could get it to the large intestine and they would rescan. Well when rescaned still no barium had moved.

We were sent home and now here I am stressing waiting for an answer. Has anyone else been through this with their gastroschisis baby or themselves? I wish I had found this board along time ago now I hope I can have some people to talk to that understand.

Thanks,

Jess

read comments (0)

My husband and I couldn’t be more thrilled to find out that we were having a baby. It was the most exciting time in our lives and to have our first born be a boy was even happier cause it’s exactally what we wanted.

I did everything a mother was supposed to do and then on the first visit that my husband couldn’t accompany me to an appointment I took along my mom.

Well we seen a different doctor than I normally did and he was great. He wanted to do a sonagram just to check how our boy was doing. Well he kept looking and not saying anything.

I was starting to get worried after 10 minutes of him looking in the same spot then he looked at me and said I believe there is something wrong.

Well he told us that he thought it was Gastroschisis but he wanted to send me to a specialist because we are from a small town and they don’t deal with that kind of stuff there.

The next week I went to a specialist who said they wanted to see me in their office in Albuquerque, NM next week.

Well my husband, my mom, and myself drove up to Albuquerque and the next day got horrible news. The doctor ran all kinds of tests, then she came in the room with me and my husband and said that it definitely was Gastroschisis and that we had a problem.

She looked at my husband and asked “Sir do you want your son?” My husband puzzled of course said “Yes, what do you mean?” She then told us that if they did not induce labor now he was going to die. My husband replied “Well yank his butt out then.” The doctor did an amnio to check the lungs of our son since I was only 32 weeks.

He was good to go and they began to induce me since they said natural labor is safer due to they don’t know exactally where the intestines are and they could cut them and hurt us both.

Our son was born July 26, 2000, he was 5lbs 3oz and 10in long. I got to hold him for a second on my stomach then they took him away. I tried to send my husband away with him but they wouldn’t allow it. It took several hours before we were allowed to see our child and I was so sad.

Finally the time came and we walked in to what we were not prepared for they didn’t give us all the details on how he would look. It took three surgeries before they finally closed him up and they had to put everything in different then normal that they had to remove his appendix also.

After 2 1/2 months I finally got to hold my child after they finally woke him and took him off the ventillator. There were so many close calls and the questions of you should start thinking about what is best for him and should you turn everything off. It was some of the most hardest descisions of our lives.

After 4 1/2 months our son finally got to come home. It was a back and fourth struggle to Albuquerque for the first year and a half. Many obstructions and kinks and just things not working right. After nine surgeries, several blood transfusions, and many hospitalizations, things finally started looking better.

Our son is now going on 8 years old and still has some problems with his stomach.  But all in all he is a pretty healthy kid and very happy. He loves to run and play football and do all the normal things any boy loves to do. I did have another child after him and was scared to death, but she was very healthy and didn’t have any issues with her stomach.

I only hope this story has helped someone and if you want to talk about it just let me know.

read comments (0)

I`m new to this … well i had never even heard of gastroschisis and you always think it will never happen to me and well it did i went in to have a ultrasound done by one of the people who does it 4d and 3d and well, i went in to found out the babys sex cause so badly i wanted a girl because i already have a lil 2 yr old boy and i was so excited to go and nervous because i knew i would be a little upset if it was a boy but little did i know that wouldnt even matter after what the doctor would end up telling me.

Well me and my husband went in and she started out using a regular ultrasound (not 3 or 4d) and i could tell right away by her face that something was not right but she just continued to talk about other things but then she asked how many ultrasounds i had had and who did them because my baby has gastroschisis and she went on to tell me so many things about what it was and what was to come and i`m just sitting there still trying to deal with her saying that he had gastroschisis that his intestines were NOT in his body.

Then the tears came, all i said, all i wanted to know was the gender, why my baby?

I was devastated but anyways i really dont know what to do my obgyn didn`t even notice it and he had done a ultrasound 4 wks prior i just know he is not competent to handle delivering of this type of baby and he hasn`t even called to make the apt.s that she said i would need to be going to, i`m already 30 wks pregnant and i just dont know….

read comments (2)