Gastroschisis

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.

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 daughter Sophie was born in April 2006. She was diagnosed with gastroschisis at my 12 week scan and the roller coaster began. I find it hard to believe now but we discussed terminating the pregnancy, such was the fear of this condition we had never even heard of.

Sophie was born 7 weeks early. I started having contractions and they tried to delay them for 4 days, finally deciding to go ahead with a C section.

Like any mother, I cannot really convey the emotion of overwhelming love I felt at that moment. But the hard part was just starting.

Sophie was operated on the following day but had complications and proceeded  to have 3 more operations over a 4 month stay in hospital. She contracted infection after infection and 3 months after she was born she developed such a serious one that she nearly died. Those 4 days in intesive care were horrific. We saw other babies pass away as we prayed for ours to live. We even had her baptised incase she never made it. She did. Thankyou God. Maybe those daily visits to the hospital chapel and tearful pleadings helped sway him. Whatever the case, I am now in his debt and will always be.

A month after that time in intesive care, Sophie came home from hospital. July 21st 2006. I cried my eyes out with happiness on the journey home and I will always swear that she looked at me with the most loving gaze I have ever seen, I took that as “We made it Mum”.

Sophie is now 20 months old and a bright, happy, mischevious little soul who is our world. She had some diet issues for the first year but these have all been ironed out and she is now a normal toddler with a normal appetite! Her scar is not nice, but this is a very small price to pay for her life.

I do not envy anyone at the start of their journey with gastro and I hope my story does not scare. I just had to be honest about the emotional journey that we had to travel to get where we are. But I tell you today - It was worth every minute to have our daughter in our lives.

Lots of love and best wishes.

Kx

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.

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

I was 27 years old and on my first pregnancy.  I had my first ultrasound when I was 7 weeks.  Everything looked good.  Then I had my second ultra-sound  around 22 weeks and we found out the my child had an abdominal wall defect called Gastroschisis.

Wow that was scary.  I had never even heard of that.  The Doctor that I was seeing told me that I should abort.

We were devastated.  We did not understand what was going on.  The doctor told us that if we were to continue on with this pregnancy that we were setting up our child up for death.  He would have muliple surgeries, eating problems, mental deficiencies.  I mean she made it sound like there was no hope for a recovery.  We went home and cried, told our families and basically told her for her word.  I made an appointment to see another doctor that specialized in late-term abortions.  This doctor said that there was no reason to terminate and I did not.  It was the happiest day of my life.  All I needed was a glimmer of hope.

I continued on with the first doctor just for the bi-weekly ultrasounds and she told me that my son was not growing properly, his head was too big compared to the rest of his body and we just could not take her negativity any longer.  We had  to transfer my care to the gastroschisis specialists in Westchester Medical Center which was one hour away from our home.  It was long trips and expensive gasoline bills but it was worth it in the long run.

I was due on the 4th of July 2004.  I delivered Kyler on June 15th, 2005.  I had an enduced labor and had a natural delivery.  He weighed 6 pounds and 7 ounces.  He had a full head of black hair and all his fingers and toes.  He was also perfectly perprtioned.

He was put into surgery and the doctors put all of his bowels inside on the first try.  The put him on a respirator because his body was not used to having his bowels on the inside and it put pressure on his lungs.  I have to tell you that he was feisty.  He did not like the tubes in his nose, he was constantly pulling them out.  I was happy that he was fighting to stay with us.  A more perfect sight I have never seen.  He was in the hospital for 14 days and then he came home with us.

He had severe acid reflux and he was on special formula that was pre-digested.  We had several scares with him but he has not needed another surgery and he can handle any food.  He goes to the bathroom normally and he smart, funny and so healthy.

He just turned 3 and I cannot imagine my life without my son.  Kyler is 3 feet 2.5 inches tall and weighs 41 pounds.  He is in the top 2 percentile for his age.  He is wonderful.  Most people when they see him they don’t believe that he was born with a defect and had  surgery.  His belly button looks a little different than everyone else’s but I am more than happy to see it because that means he is special.

I am a lucky lady and I have my wonderful boyfriend to thank and my family.  They were my backbone and my support system through my ordeal.  I really think that we mom’s need to surround ourselves with positive people.  We have enough to worry about without others not giving us any faith in our circumstances.

I hope that when other mothers read my story it brings them hope.  I wish you all the best of luck and continued success for all of the children being born or diagnosed with Gastroschisis.

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.

Hi i am 17 years of age and 16 weeks pregnant i went for a dating scan about 4 weeks ago and i was told that my baby had gastroschisis and wanted to do a further scan when i was 16 weeks.

I had the scan done last thursday and she was concerned because there was fluid on the babys brain and a lump on her spine and her spine was bent.
The doctor said she wanted to do an amniocentisis and i had the choice of terminating the pregnancy or carrying on.

When the doctor went to go get some info i told my mum that every one deserves a chance at life. so i decided to carry on. was this the right thing to do or am i being selfish for putting her life at risk. update after amniocentisis on Thursday.