Gastroschisis

My son was born with Gastroschisis and has had an amazing recovery, having left Addenbrookes after only 13 days and no real problems other than very slow weight gain in the initial 6 months.

He is now on the 75th centile and 14 months old.

However he has lately started suffering with really bad constipation. This morning he almost screamed the house down trying to pass a stool. he has a reasonably balanced diet, and I try to give him prunes every few days, but he is still in pain at least once a week.

Has anyone else had this problem?

Derringer was born on Nov. 24, 2007. I found out that he had gastroschisis when I was about 5 months pregnant. When I found this out I was terrified.

I didn’t know what to do and I thought the worst was going to happen. After a couple of visits to the doctor they said that everything would be fine and that they would have to do one surgery when he was born because there was only a small amount of his bowels that were out.

After I got that news and did a some research on the condition I felt a little better. My pregnancy went great I had no pain or sickness. After the 8th month my son decided to come early. I went in the hospital thinking I was going to get a c section because that is what was discussed with the doctor and that is what she thought was best for me. Unfortunately things didn’t go as planned when I got to the hospital I was there for four days before I was fully dilated. When that moment came the doctors told me that I would be delivering naturally. I was so scared but in the end everything went well.

When my son was born I seen him for a second and then they took him off to do his surgery. Later that night the doctor told me that more bowels were out than they expected and a lot of it was dead. They ended up having to remove most of his bowels and they kept him in the hospital for a couple of weeks. They then decided they wanted to do a STEP procedure on him to lengthen what bowels he had left.

The surgery was successful and after awhile they began trying to feed him. When they did that it didn’t go so well. He began vomiting all the time. After a few more tests they told me that a part of his bowel was getting kinked up causing him to vomit a lot. It’s been 5 months now and my son is still in the hospital.

They now decided to wait on this last surgery because they believe he is going to need a transplant now. There next plan is to send him home on his TPN and wait until he is two so that he can then be evaluated for the surgery. I really don’t know what to do because at the beginning I was reassured that he would be fine and know I’m being told he is going to need a transplant. Is there anyone else who is going through this.

Hi my name is julie,

I have a son who at 5 month of pregnancy was diagnosed with gastroschisis, he is now 2 and a half yrs old.

It was so scary at first when we found out the news, we were in the hospital for over two months and we were so lucky because at our first surgery we were done, all the drs said it was God taking care of us because they had never seen a baby with this condition do so well.

Eric will be 3yrs in August 3 of 08, and he eat, play runs like a normal kid. If you want to chat about our experience email me.

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..

I am seventeen and just recently had my first child. It will be an experience that i will never forget. My child was supposed to be born April 27 2008 but gastroschisis made other plans. On Wednesday Febuary 27 i went into the hospital to check the babies heart rate. I hadn`t felt any movement for over 24 hours. The nurse had a look of panic on her face when she couldnt find a heartbeat.

I knew right away that he had died.

They then took me to the ultrasound room and proclaimed that they could not find a heartrate and my son was presumably gone. I was in complete and utter shock. Just last week i was looking through adoption profiles to give my son the future he deserved and now he will never have a future.

My mother was there to support me the whole time. I was then admitted into the hospital right away. I was induced by taking a pill every 4 hours to send me into labor. I was put on morphine drip and i.v after 10 min. Everything around me was happening so fast.

I was not prepared for this to happen that day. I wasnt prepared for a normal delivery either i had planed on having a c-section. I was in labor for over 24 hours till Finally on the 29th at 1:30 i started delivery. It took all of about 7 min till he was out.

The only medication i had was morphine. Once they cut the cord and took him to be cleaned and wrapped it finally sunk in that he was gone. I cried so hard i was hysterical. My mother and my sons father were in the room at the time. I got to hold him all wrapped up in a blanket afterward and his hand and face was the only thing i wanted to see. I just wrapped his fingers around my index fingure and held him. I couldnt believe that he was gone. I had loved him so much.

The afterbirth would not come out because it was so early. I then had to go for a DNC where they remove the afterbirth surgically. I had lost half my blood volume in delivery and during surgery.

When i came back from surgery his father was gone, and he was also taken to the funeral home. His father had left me at around five months into the pregnancy and then not even a couple weeks after that he was already dating someone else. I did not figure the second part out til the morning after delivery when i was still in the hospital he told me. I was getting a blood transufion and filling out a death certificate. I couldn`t believe it. I then stayed in the hospital until Sunday and was released to go home.

Now i feel alone. I sometimes wonder why god chose me to have this heavy burdon. I never did anything wrong. I followed all the rules never even coming around 2nd hand smoke because i wanted everything for my child. I watch as other teen moms smoke everyday and i become very bitter. Im not ashamed that i am a teen mother. I did nothing wrong. But i am ashamed that i am clumped together with people who dont take care of themselves or their child.

I am not irresponsible and i am not immature. I just feel cheated. I know i was too young to give him everything a baby needed, and i wish i could have given the couple i had picked out a child. Even if hes not with me as long as i know that hes living a normal life like every other child i would have been happy. But i didn`t even get that. The doctors gave me no reason to fear this. Every visit i went to all my doctors made the same comment, that he was so active and moved so much.

I named my son Aiden Ray Delvallee

I will always love him -Devon

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.

My son Caden was born on January 25th 2007 with gastroschisis.
I was about 16 weeks along when it was confirmed. i must say, i feel very blessed to have had it easy with him. he recovered in four weeks, and hasnt had any ongoing problems. feel free to keep in touch with me!

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

My son Matthew was born at 34 weeks and wieghed 3lb 15oz at Bristol St. Michaels.  I was 20 years old and scared. Matthews gastroschisis was bad he had to have a blockage taken out when he was 3 weeks old.

He suffered from an extened abdomen for a very long time .He has chronic lung diease and every time he got a cold or flu we were back in intensive care the amount of times we were told that ‘He won’t make it through the night’.(famous last words from the doctors!)
Matthew finally came out of hospital 8 months later he was back and forth to the hospital for a while.

His chronic lung disease is handled with inhalers. He was diagnosed with amyoplasia last year, which means he has limited movement in his shoulders, arms and fingers. But i am glad to say that i am the proud mother of an extremly livley, healthy, intelligant and cheeky boy of 6 years old!

Hi everyone, this is our story. My son is 3 months old and was born with gastroschisis…

My son was diagnosed with gastroschisis at my 18 week ultrasound. I knew immediately what is was and from then on I had routine ultrasounds and spend the days researching and trying to stay positive.

I started seeing a very caring GP in addition to my local clinic and this extra care really helped me get through the pregnancy. Having the baby checked often really helped to ease my mind during the pregnancy, so for those pregnant now I’d recommend seeking as support as possible.

I was going to be induced at 37 weeks but my son decided to come even earlier and I had an emergency caesarian at 36+2 weeks. I delivered at a major hospital 3 hours from home who have paediatric surgeons on call so his gastroschisis was repaired within four hours after his birth. He had a primary repair and the whole thing was completed quite quickly, but I dont think the outcome would have been affected if he had to wait longer for his surgery.

My son had morphine for pain relief, then baby panadol but was off all pain meds by day 3. He was 5lb 12oz, 4 weeks early, and we spend 16 days in NICU. During our time in NICU we were so proud of him for going through what he had to and now he is a happy healthy 3 month old.

This has only been a short one from me for now but please feel free to contact me with any questions or support you may need. I also have photos if anyone would like to see some.