Gastroschisis

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

My husband and I had a beautiful baby girl born on November 9, 2007 with gastroschisis. It was a long hard journey, but she is now home with us after 52 days in Chidlren’s hospital. This was a very difficult time and we had good days and bad days. One thing that was really hard for me was that someone else was constantly taking care of my baby and making important descisions in her life. It was very hard to leave her and go home at night.

She came home on December 31st and is doing great! She’s eating well and going to the bathroom regualrly. She does have a lot of gas and grunts very often, but otherwise she’s a very happy healthy baby! A miracle child! And we love her lots!

I have read the stories about people in their 20’s that have survived this condition and since I have a daughter that has this condition I would like to know if there have been any women who have had gastroschisis and then grown up and had a baby of their own. If so please let me know how that went for you. I know my daughter is still very young, but of course I want her to be able to have children of her own someday.

I also want to encourgae all those moms out there who are wondering “what did I do to cause this”….no one really knows…so stop blaming yourself.  I know in our situation I was 26 years old (not that young) and I have never used drugs and I did not take any over the counter medications when I was pregnant or before I knew I was pregnant, and I don’t smoke nor am I around smokers while they are smoking on a regualr basis. No one really knows what causes this condition. Sometimes bad things just happen, so please don’t waste time blaming yourself.

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.

Hello!

I was 24 yrs old  in 2004 when my husband and i went in for a routine check-up during my second pregnancy.  this was such an exciting time b/c we were going to find out the sex our newest addition to the family.  when we went to the doctor’s office all was well until his face went a blank and he told us something did not appear normal.  he sent me on to a speacialist which saw me the same day.  he told me that my SON had gastroschisis and would most likely need surgery after his birth.

this was the beginning of complete and total disaray for me.  i was so incredibly scared for my baby and his health.  not to mention that i had never heard of this rare abnormalty before in my life.  i was scared and very detemined for answers which seemed few and far between.  as i’m sure most of you know, they like to say less than more in most of these situations.

my husband and i are both white were in our twenty’s at the time.  we had both come from pretty well to do families in texas.

i was told that i was a high risk pregnancy and would be seen by the dr. every 2 weeks.  this did offer me a bit of comfort b/c i was in contact with the doctors so much and i felt like i was able to moniter my pregnancy better.

as the days grew closer to my son’s much awaited arrival my husband and i grew more and more nervous.  so nervous it was gut wrenching.  i can’t even try to explain it to someone who can’t relate.  it was the worst feeling in the world.  yet, i was so excited to meet this little man inside of me who was so active and normal seeming to me.

at 37 weeks when i went for my now weekly check up with the specialist, he told me that my baby was entering into growth retardation and needed to be delivered soon.  the did an amnioscentisis and found that his lungs were not quite ready yet.  at this point i was told to expect that he would be small but not much more than that.  it could be a best case scenario if you will or it could be an extreme case.  i was terrified.  i was given a shot to mature his lungs and checked again the next day.  it was then that i was told he was ready to be born!  they scheduled a c-section for the next morning and told me to go home and rest.

i must say that night i cried so much.  i was scared, nervous, scared nervous….you know the feeling.

the next morning i went in for delivery and about 1 hr later i was hearing my sweet little angel being born.  it was the most amazing sound that my ears had ever heard.  knowing he was okay enough to cry was enough for me.  i knew at this point i was in the hands of god and the eyes of the angels.  my son, everson was born 6 pounds 9 ounces and 21 inches long.  this was awesome that he weighed so much!!!!! he amazed everyone immediatley and continues to this very day:)

my son, everson was born with his stomach, appendix, colan, liver, kidneys, small intestine, large intestine, bowel  everything in his midsection on the outside.  much more than i had expected.  he went into surgery 2 hours after he was born.  my husband said that all of his intestines put together were bigger than he was when they delivered him.  my husband watched.  ( i breathe very deeply right now from anxiety that i feel just thinking about it.) during his first surgery they tried  to put everything back inside but were unable to because everything was so swollen from floating in the amniotic fluid for 9 months.  i expected this might happen.

he went through 7 surguries, e-coli, 2 blood tranfusions, paralyzing medication and a lot of love but the finaly got everything in and were able to close up the wall.  THANK YOU GOD!!!!!

now he could begin waking up, trying to eat, keeping the food down, and staying healhy.  this was a whole new path thati did not expect.  b/c once you get evrything in is just like stage 1.  then there is stage 2 of finding out if everything works properly or if he will need further medical attentio in life.    he also suffered from ademia and was so swollen himself.  which i also expected.

at 2 weeks old i got to finally hold my son for the fist time.  my husband and i were beside ourselves.  here was this amazingly stong yet so tiny individual who was a true fighter.  the nurse placed him in my arms and as i put my lips to his cheek his hand laid ever so gently on my face.  for this was a love like no other i  knew:)

after 37 days and many obstacles to get there, my husband i got to leave the hospital with our little miracle boy.  he was eating and digesting 3onces of milk every 3-4 hours.  he also had never had problems with this which was a miracle all in itself.  it’s amazing how each little step in this is a huge enormous miracle by itself.

and now i find myself getting on to the same little strong willed child and i smile and remind myself to thank god each and every day that he is healthy and totally normal.  his scar is bout 3 inches long and is his first battle wound in life.  we call it his “super hero” scar.  because he is a super hero!!

so, to you my thoughts and prayers go out.  these children are amazingly strong, incredibly blessed, and unbelievably loved by so many.  a special thank you goes out to all the doctors, nurses, family, friends and prayers.  thank you.  we love you!  all of you are amazing.  if you are just now going through this please feel free to contact me for support.  but first contact god and place all of your faith in him:)

god bless

Hi,

My name is Debbie and this is the story of my Son Tommy, who now is 23. I know some are thinking why put this in with him so old now, but thought it would hopefully give parents of children an idea of what they may expect long term.

I was 18 when I had gotten pregnant and it was unplanned. I was 5′9″ and only 115lbs when i fell pregnant, with a history of anorexia. Obviously, I was very under weight and was told, “You really need to gain weight”.
Well, I sure did that! They did not do any ultrasounds during my pregnancy, so as far as I knew, everything was fine. We thought I was due October 12, 1984. I began gaining weight, and gaining and gaining. By the time I delivered, I had gained a whopping 96lbs. Still, we thought all was fine. In general, my pregnancy was uneventful.

On September 22 1984 about 8.30 in the morning, I started having, what I thought were labor pains. So, around noon headed to the hospital. Scared and worried cause he was not due for 20 days, but the Doctors said that was fine. As my labor progressed, it was rather uneventful, until my water broke.

When it did the mood in the labor room radically changed. Not only was the water very green, but a foot came barreling out and ripped me both inside and out. I can remember them rushing around the room, telling my husband he needed to leave. between crying from the pain and trying to get answers as to what was going on, I can still remember the looks on the nurses faces as they rushed me to the delivery room.

They immediately put me under general anesthesia. I can still remember starting to wake up from it and looking for my husband, who was standing next to me but did not see my baby. Did not hear any crying.

It is strange how I can close my eyes and still hear the doctor as he walked over to me. I did not hear, congratulations you have a son, the words I heard were “there are complications with the baby” I was like, what? What do you mean complications? Where is my baby! They proceeded to tell me that he was born with what was called gastroschisis.

I had no idea what they meant! Then they said, “Your son’s bowels are on the outside of his body.” To this day, those words still ring in my head. We have to transport him to another hospital for emergency surgery. Of course, I started to cry.  It was a combination of ‘I have a son’ and “what?  What do you mean transport, surgery?”

By that point, I was more aware of what they were saying and told them I want to see my son. They had already put him in the incubator and was on his way to the ambulance to be transported to the other hospital. Tommy was 5 lbs 7 oz and 20 inches long. I was taken to the recovery room, and sent my husband to the other hospital. Now, you would think that your parents would want to know you had there first grandchild. My relationship with them had been strained, as they did not like my husband.

The night before I had gone into labor, my mother had said to me “I hope the baby is born dead” Now, there was a very good chance my son may not live. I called hoping that when they heard, there attitude would change. My mother answered the phone, I told her I was in the hospital and had had the baby. Her response was “who gives a damn” Then my father got on the phone and started asking what you would expect, what did you have, how the baby is, how are you, which he did. I proceeded to tell him I had a son but there were complications. Well, I expected their support but, did not get it.

A little while later I received a call from the other hospital to fill me in on what was going on. It was then I learned there was more bad news. Tommy was not 20 days early, but rather 10 weeks early. He was also found to have pneumonia in both his lungs and they said, “We do not know if he is going to survive the next 24 hours.”

So there I was, a different hospital than my son was, all alone. His surgery took 5 1/2 hours and they just shoved everything back in.

The next morning, I told them I want to leave; I want to be with my son, who they still were very unsure if he was going to survive. They wanted me to stay because of the difficult delivery. I said, you can either release me, or give me the form to sign AMA. I was afraid my son was going to die and I would not get to see him, hold him or even touch him. They did release me.

Obviously, he did survive. It was a tough 12 weeks of him in the NICU. With how early he was, I did not have any milk so was unable to even pump for when he could eat. I spent every day, all day at the hospital. They had rooms in the professional building attached that we were able to stay at so we were close. It was a very long 12 weeks, but finally, he was able to come home.

Tommy was home for a week when it was discovered that he had an inaugural hernia, and he needed to be re-admitted again, for emergency surgery. I did not think I could take anymore. During the surgery, Tommy flat lined twice. What normally would be maybe a few days in the hospital, ended up a week in PICU and then another 4 days in pediatrics. Again, the doctors were shocked and he survived.

While growing up Tommy had a real problem with failure to thrive. He just could not gain weight. When he was six, we found out that three infants in the neonatal unit at the same time he was, had received tainted blood, with, you guessed it, HIV. Therefore, now it was time for another scare. Luckily, his HIV was negative. However, we did find out that he had CMV as well as Ebstien Barr. When they did x-rays, we found out that he also had a transverse malrotated colon. It explained why even now to a certain degree, he has a bit of a barrel chest. They had just shoved everything back in.

Growing up, he was always very self-conscious of the scar that is about 9 inches long. Even now, he avoids walking around without a shirt as is self-conscious.

Considering all his obstacles, He has done very well. Tommy is 6′3″ and is 145lbs, so still very thin. Recently he has had problems with one side of the incision occasionally having like a green oozing coming from it. why?  Who knows. Currently they are talking about possibly having to go in and remove scar tissue as his is rather thick.

I was not lucky and did not have anything like this when Tommy was little. No contact with others with a child born with the same problem, no idea what to expect or support from others who understood what I was going through. Even with all his problems, I did have another child, 26 months later. A full term very healthy daughter who is now in the US Navy. Was I scared when got pregnant with her? Absolutely petrified! I had a total of nine ultrasounds, and a few scares with pre term labor.

Knowing that those of you that are having children now with Gastroschisis are lucky. They are finding it much more often while you are pregnant and it helps prepare you for what is to come, but you can never be prepared for an ill child.

You also have a site like this to talk to others whom have been through what you are going through and are here to talk to you about it, understand what you are feeling, and are here to listen.

Over the past 23 years I have spoken often with parents, either knowing there child has the defect and answered questions as a parent knowing what to expect, and even on about 6 occasions, been there for them, when there child was first born. Even being there for them when they have first gone into a NICU.

Tommy’s story is one, as your Childs will be, like no other child born with Gastroschisis. But, know, if you need someone to ask a question, or just to be able to call and be there for you, I would be more than happy to be as I have tried to give others the support which I did not receive. Know that now, the treatments are better, not rushed and so much more is known and understood than 23 years ago.

If anyone wants to ask me anything at all, please feel free to either email me or even IM me. Now, at 42, I am happily re married, and dealing with my own medical disability of Reflex Sympathetic Dystrophy for the past 9 years. So, I am on the computer a lot, both my AIM and Yahoo id is panthrvamp so if ever want to write or chat, please don’t hesitate, and if want to talk on the phone, just reach me via that email address or ID and would be more than happy to give you my number.

The best way to get through having a child with ANY birth defect, is to have someone to talk to, that may understand the exact thing you are going through or even just the stress of having a child in a NICU unit. I wish there was something like this for me when my son was little and growing up.

For those that are experiencing raising a child born with Gastroschisis, I hope that you find my story as one that says, you will get through it, they can do very well.

Blessed Be

Debbie

My son was born in the National Naval Medical Center in Washington, DC on the fourth of February (Superbowl Sunday) by C-section at 34 weeks.  I was stationed in Germany when we found out he had this condition and after a lot of paperwork, my doctor at Landstuhl Regional Medical Center had me sent to NNMC to deliver..

I went in around 9 in the morning because Azriel had not moved in almost 24 hours.  Upon monitoring, they found that his heart beat was dropping dangerously during my contractions, and he was not recovering well.  I was told it would be better to monitor him outside of the womb and they would be inducing me.  They waited a few hours, gave me an epidural that did not reach my left side and had to be redone, and then decided a C-section would be best.

I was expecting not to be able to see my baby until after surgery, but when the surgeon we had met on a tour of the hospital came in to talk me, it was to ask if we wanted to let my little boy live or not.

Sometime during the birth process, the hole in my son’s stomach through which his intestines were protruding closed in on his bowel, cutting off circulation.  The bowel itself died, and as a result, the surgeon could either remove his entire lower intestine creating severe short bowel syndrome or just let him die.

My husband and I were both horrified and immediately told him to go save our son and quit asking stupid questions.

After about an hour, I finally got to see Azriel.  He was a little 4lb 6oz tube factory with a mop of wet, black hair that covered his whole head.  He was beautiful to me and I didn’t even look at all the tubes or the raw-looking cut across my little baby’s abdomen.  Me and my husband were both instantly in love.

After my short stay in the hospital, my husband and I “moved” into the hotel/barracks across from the hospital paying $30 a night waiting for paperwork for housing at our new assignment post.  We carried all of the flowers and “It’s a Boy” balloons out of the maternity ward and were asked by an innocent passer-by “Oh, where is the baby?”

Walking across the street three and four times a day to watch our baby sleep were the highlights of our days. In talking with our baby’s surgeon, we decided to allow him to reconnect his bowel (which had been turned into an ostomy, basically opening out of a hole in his stomach) to his colon to see if anything would pass through.  (Which went well, he pooped within days!)

Sitting down with specialists and surgeons also took up a lot of our time as we listened to our son’s options.  Depending on how well he did, he would be considered for a small bowel transplant.  We were told that since TPN would be his main source of nutrition for a long period of time, he would also be put on the list to receive a liver as well.

As the weeks went by, my son faced no real problems.  He came off the respirator within 24 hours of birth.  Maintaining a working central line in his arm or leg were difficult as he often pulled them out.  We watched him grown bigger and stronger, passing 5 lbs and working his way on to 6.  The breastmilk I pumped and froze tearfully, wondering if he would ever be able to drink it, began to be infused into his stomach through his G-tube, a small feeding device surgically placed in his stomach, and he hit a growth spurt that we were all glad to see.

After about 2 months, everyone (his GI specialists and pediatric surgeon and NICU staff) felt comfortable sending him home on TPN.  My husband and I were to be trained on his home pumps and in the mixing of his TPN.  Also, we were taught how to replace the dressing on his broviac (central line) and clean around his G-tube.  A week before he was to be released to a half-way facility where we would be monitored as we cared for him prior to him returning home, we noticed he was a little less active and seemed very tired.  We informed the nurse who said it was normal and not to worry.  The next day we were met by all of his doctors, who informed us he had a fungal infection; a fungus had attached itself and was growing on the plastic on his broviac.  Also, they had drained large amounts of fluid out of his stomach so they were no longer giving him breastmilk until they could do a study to see if his intestinal track was blocked some way.

This was our first setback.  He was treated for the infection, and the nurses began suctioning his stomach with a syringe from his G-tube every 6 hours.  After about 2 or 3 weeks, a nurse let it slip that he would be coming straight home, on the antibiotics.  We were exstatic and were finally told by the doctor that we would be “rooming in” in the next few days.

For almost a week we stayed with Azriel in a hospital room.  Every 6 hours we suctioned his little tummy and turned off his TPN to administer his antibiotic.  The nurses came and changed out his TPN every 24 hours.  On the last day, a nurse from the company who makes my son’s TPN pumps came and showed us how to program the TPN, Lipid, and medicine pumps.  On the 17th of April me and my husband put our little 7lb miracle into the carseat that had been waiting for his homecoming for months and did what we had watched countless other families do-carry our baby down the hall and out of the hospital.

In a blur, a home nurse met us at our home with a huge box of medical supplies which she explained the use of.  She watched us to make sure we knew how to change his TPN and then showed us how to add the vitamins to his TPN bag with needles.  The first days were hard; Azriel had no sleep pattern from his stay in the NICU.  He did not sleep at night.  We were up with beeping pumps, we were up draining bile out of his stomach, and we were up with changing out his medicine, but mostly we were up with a crying baby.  We got no sleep, and with both of us being active duty military, one of us had to report each morning at 0630.  Life was very hard.  We got frustrated.

On his first visit to his GI doctor at Walter Reed Army Medical Center, she told us that his G-tube was too small.  She did not have another one in the size he needed, so she gave him one that protruded 4 or 5 inches out of the cavity in his stomach while we waited for the one that is flush with his skin to be delivered.  He bled and leaked terribly.  When we got home, we realized that we could not drain him out of this one, and Azriel’s little tummy was getting full.  A call to the home nurse resulted in an ER visit.  However, as we were getting him ready to go, my husband caught his broviac on the wheel of the bassinette and pulled it completely out of my son’s chest. In a panic, we packed our very calm, very quiet baby up and rushed him to the hospital.

Azriel stayed at Walter Reed for about a week and was then released.  He was only home for a few days when he choked on his own spit while crying and stopped breathing.  We performed CPR on him like we were taught in the NICU until the paramedics arrived and gave him oxygen.  This resulted in another week-long stay and a swallow study which revealed that he could be fed orally as long as it was thickened with a special honey used to thicken baby formula so that babies do not swallow too fast and choke.  FINALLY I was able to watch my son suck down some breastmilk from a bottle.

Azriel is presently 9lbs, 4 months old, and waiting from the comfort of his own home for organs.  We will attempt the STEP procedure (hopefully) in the near future to try to avoid the transplant.

I am 25 and expecting my second child. Today, my husband and I learned that our baby has gastroschisis. This news has us very concerned for the well-being of our baby.
Beyond the initial surgery our baby will undergo, I don’t know what to expect. How often should ultrasounds be performed to monitor the baby’s development? Any thoughts or suggestions are appreciated. Bst, Ashley

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….

Hello. My name is Jordan Bennett. I am 18 years old and my husband and I just got married.
We are in our 5th month of pregnancy and we just got the news that our baby will be born with gastroschisis. I know this is a treatable thing, but my heart is just aching for my baby and I’m so worried about the surgery and things to come.

I haven’t really got a chance to talk to the doctor about things yet. It’s just hard financially and just plain worrying.

Hello, I have just found out at my 28 weeks scan that my baby  has gastroschisis…

Today october 4, 2007, i went to the hospital to have a gender identification of  my baby (ultrasound). I was so excited with my husband to know the sex, and its a girl, but we are very very very sad because we know that our baby has gastroschisis.

We are so sad and we dont know what to do.Its our first baby.And of course we love her very much.

To my fellow friends who has a experience with this problem,please help me to solve this……how?….why?….and  what i  must to do.

Is my life dangerous too? Please help me…

Thanks a lot..and i wait your response!….God bless.

Sad Mother,

chilmaya