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?

It`s been close on a year now since i set up this Gastroschisis iniative and it is time to take a closer look at the success and/or failures of the website.

When i initially set it all up my thoughts were along the lines of having a useful Gastroschisis resource for parents to be and existing parents of babies born with this condition.
Over the year i have developed it into an expanded resource encompassing research and development, a gastroschisis toolbar, videos, your blogs and at the very core of the site is your birth stories and experiences.

Having read so many at times heart wrenching accounts of the Gastroschisis condition it has given me a renewed enthusiasm to carry on developing the website further.

As i am writing this i have just approved the latest article added by Mel and her now 1 year old Daughter, Mel becomes our 148th member since i set the website up in May 2007 and reaching even the 100th member milestone seems like a double edged sword.

I am pleased that the website has reached out to so many but on the opposite to that i am saddened to think that there are so many cases of the condition.

Now for more good news.

The website in my eyes had become a bit dated in design and the functionality of the system i was using did not offer all of the features i wanted to offer to our shared community, so it is with great pleasure that i can now announce that the website has undergone a fresh lick of paint, i think you are going to like the new website i know i do, but of course i would say that wouldn`t i?

For all of the existing members i have sent you an email, you will need to re-register it is just as quick and simple as before.

The transition from the old design to the new one is now complete

Dean

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.

Hi i’m 19 years old and have a gorgeous little girl called macie pink. she was born on 25th sept 07 with gastroshisis. i found out on my triple test results that she had this condition. i was so worried at first and thought nothing but bad thoughts, i researched everyday about it and started feeling a bit better about it. i had scans every 2 weeks at my local hospital and at the hospital that was delivering ny baby.(addanbrookes)

i was meant to be getting induced at 37 weeks but macie decided to come early at 36 weeks by emergancy c- section. she was 4lb 6oz and had her operation 2 hours after birth. it was a scary experiance but i knew she was in safe hands. the surgeons were brillant and when i got out of recovery i got wheeled into intensive care to see macie she was on a venterlator for 1 day and stayed in the for 1 week then moved into special care for a longer 3 weeks. macie couldn’t have milk until she had a poo which took 2 and half weeks.she started on 1 ml of wilk every 4 hours and was put down her tube in her nose, and went up to 20ml every 3 hours and so on…

finally we got transfered to our local hospital and was there a further 2 weeks. it was a very long and stressful time for us but we’ve got through it and macie is 5 months now weighing 11lb. she so precious and so brave. her scar is hardly noticable.

so to all you mummy’s 2 be with babies going to be born with gastroschisis its really not that bad u must be strong for your little 1s! take care x

My daughter was born with gastroschisis on 4th Nov 2007 by emergency c section at 37+1 weeks due to reduced foetal movements and a possible twist in the bowel. Luckily Ella was born with uncomplicated gastroschisis and there was no twist in the bowel.

Ella had surgery 9 hours after birth and after only around 35 hours on a ventilator, 5 days in SCBU and 9 days on the ward, Ella came home.

She spent a total of 15 days in hospital and since coming home has had no problems since! She is a very good baby and has been sleeping through since 9 weeks!

I know we were very lucky with our experience and I wish everyone the best. Feel free to contact me at emersonbrown@tiscali.co.uk for any advice or to chat.

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.

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

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.