Gastroschisis » Birth Stories

I am 35 and born with Gastroschisis

layla9801 — Wed, 28 Jul 2010 05:50:01 +0000

I was born in 1975 in Houston Tx. I was 3months premature and a few other complications. As an infant I had 7 surgeries to fix my stomach. Today I have 3 healthy girls and now having complications and seeking to have reconstructive surgery done. I am having rashes that have developed into staph infections many times. No matter what I do I get the rash in between the folds of my skin of the scar and it continues to worsen no matter what I do. I have lost weight and the problem continues or worsen do to the overlaps. I have talked with a surgeon and he said it is possible to straighten the scar but have to have invasive CAT scan done to be positive I can have the surgery.
I am wanting to know if anyone has had the procedure done and if it has helped. I am afraid this will become worse as I get older and the infections will get to a point that I cannot control and it cause more permanent damage than I have already.

Thank you for any help or advice you can give me.

I am 35 and born with Gastroschisis is a post from: Gastroschisis

~Our Aiden Davis~

KaylaSummer87 — Wed, 14 Jul 2010 13:49:31 +0000

We found out when I was 14 weeks pregnant that our baby’s intestines were outside of its body, a condition called Gastroschisis. Me being 22 years old and the father 23, we both broke down. The first thing we found out about our unborn child was that something was wrong. My OB sent me to a maternal fetal medicine doctor, whom I continued to see throughout my pregnancy.
On March 16, 2010 we had an appointment with the MFM doc to do an amnioscentisis to see if the babies’ lungs had developed. Due to fecal matter and an excess amount of amniotic fluid they arranged for us to go the hospital that night for a c-section. I was due on April 10th.
Aiden was born at 6:20 PM and weighed 5.2 lbs. As soon as he was born a team of doctors took him to surgery. The pediatric surgeon came to us and told his that a large amount of his small intestines had been out and about 3-4 inches of them had died. He performed a surgery to remove that section and gave Aiden two colostomies. He had a yellow bag stuck with adhesive over them that the nurses had to drain of acidic green fluid frequently. For the next couple weeks, Aiden lived off of IV fluids and we prayed for weight gain.
April 8th, Aiden had another surgery to reconnect his intestines and sew up his belly. A week after, they began giving him tiny amounts to eat and slowly stretching his stomach. The last week of April they moved us from NICU1 to NICU2, a less critical area babies go to when they’re close to going home.
Saturday, May 1st, Aiden slept ALL day and didn’t respond as well to anything. His color also changed to a yellow/gray. His heart rate was staying around 200 while he was sleeping, much higher than his usual 150-160BPM when he was awake. We encouraged a nurse that something was wrong. She got the doctor to take x-rays, draw blood for cultures and tests, and the doctor told us that they would draw spinal fluid “just encase but about 1% of the time we actually find something wrong.” They came back and told us his white cells in the spinal fluid were around 6,000 and should be about 50 or 60, there was definitely something wrong. They knew he had developed meningitis, he was taken back to NICU1, hooked back up to IVs and began a blood transfusion,we were crushed. The doctor said that if we had waiting until morning, he would’ve been dead and that he was now “in God’s hands”.
They discovered his meningitis was due to Group B Strep bacteria, which I tested negative for. He received 14 days of antibiotics after his first negative blood culture. Aiden bounced back quickly, but due to the Gastroschisis, could not keep his food down. I was staying at a Ronald McDonald house, because our home was a hour and a half away. I would sit with him every day and every night. Sometimes, feedings would be puked right back up, every where. The surgeon said that we would just have a “laundry problem” and that he would spit a lot but would grow out of it. They began giving him a medicine that would decrease the amount of bacteria in his intestines, which helped tremendously. They went from discussing a feeding tube with us for continuous feeds at night time, to discussing NICU2 and going home. The medicine had been our ticket out.
FINALLY, May 27th we were dismissed from the hospital. This whole time, only 4 people other than the father and I had been allowed to see him. Over the next few days many family and friends came to meet our little miracle.
He just had surgery July 12th on a hernia in his groin, a hydrocele, and a circumcision. The only other possible surgery that may be in our future would be for an umbilical hernia, which the surgeon says usually goes away and he won’t operate until he’s 3 or 4 years old.
The only things that tell of his amazing journey are his scar (no belly button), and a horrible case of acid reflux which he receives Zantac for 3 times a day. He seems to have came through the meningitis unscathed. The doctors had actually prepared us for the worst, possible loss of motor skills, language, learning disability, a developmental delay.
His pediatrician say he is right on target with his milestones and may be even a little advanced. We never couldn’t imagined how beautiful, happy, and perfect our little one would be after all he had been through. Thanks to the prayers of churches, friends, and family, and an amazing staff of pediatric doctors and surgeons, Aiden lives a perfectly normal and happy life

~Our Aiden Davis~ is a post from: Gastroschisis

I’m 21 and was born with Gastrschisis…

Jess89nPhx — Thu, 08 Jul 2010 17:42:03 +0000

I have never meat anyone who was born with gastroschisis, and was wondering if this could cause problems getting pregnant or if it might affect the outcome of a baby born from a mother with this condition. If anyone has gone through a pregnancy I would greatly appreciate your advice.

Alsoi have had 21 years to get used to my scar, however I still do not like the way it looks or to let people see it. i am afraid that they will not understand what I went through.
I guess I just need to hear that everything will be ok and that its not a big deal from someone who has gone through this. Unfortunately for me it doesn not hold the same value coming from my parents.

I’m 21 and was born with Gastrschisis… is a post from: Gastroschisis

Born with gastroschisis following long term effect at 18.

kalah.gill — Wed, 07 Jul 2010 17:41:39 +0000

I was born in Minneapolis Minnesota Jan. of 1991. From what I hear babies born now have twice the technology to make the stomach look much better than mine. Not only was I born with it but at 18 years old I woke up throwing up and could not walk. I was hospitalized just to be told I was fine then sent to a gastro doc who realized there was absolutely no movement in my stomach. They admitted me taking it 3 weeks to figure out what was wrong. I was immediately sent to Atlanta for more tests. This is where I recieved the worst news ever. I has adhesions and they would have to do surgery to remove the scar tissue.They quickly had me in surgery once again at 18 just to add to the huge scar there before. When i was born they had carved a belly button in my scar to make it look semi normal, but this surgery they completely took my belly button out and all there is is a bumpy line reminding me of what a miracle i am. not only one time but twice. I have thought about plastic surgery just because my scar looks so bad but I dont know if I should.

Born with gastroschisis following long term effect at 18. is a post from: Gastroschisis

A Wonderful Life thanks to Gastroschisis

lisa keddy — Tue, 06 Jul 2010 17:41:16 +0000

Hi,

My name is Lisa Keddy and I was born in 1967 in Toronto, Ontario
Canada and I was born with Gastroschisis I do not have a belly button
but I do have a indentation scar where my feeding tube was for 2 months.
I was born in the Humbar Hospital in Toronto was was rushed to Sick Childrens
Hospital and had my first, of many, 8 hour surgery when I was only 3 hours old.
Due dead bowel tissue my bowel is half of a normal persons and I monitor what
I eat like very little red meat, nuts, spicy food.

There was no side effects growing up. When they thought I had appendicitis, because
your appendix are on your right side, but when they operated they found it to be a
ruptured cyst on my right ovary AND my appendiz where on my left side- how funny is that.

I have had to amazing boys naturally and they have had no problems as well as being married
to a wonderful man- who was also my first boyfriend- for 23 years.

I work in nursing, after going back to school a year ago, and I work with the elderly now.
People I work with and friends are always saying they do not like getting older. I loved
turning 25, 30, 35, 40 and now that I am 43 I can not wait to turn 45. What I tell them is
that by the grace of god, a good surgeon and even back then being very stubborn- I am alive
today and every morning I wake up is a blessing and every night I go to sleep I thank God
for giving me one more day. I know what the other outcome could have been and I am just
happy to be here and enjoying my life.

If you would like to talk or ask me questions you can contact me at
fabfour.keddy@ns.sympatico.ca
Lisa Kedd

A Wonderful Life thanks to Gastroschisis is a post from: Gastroschisis

34 weeks now

babymac — Mon, 05 Jul 2010 17:40:25 +0000

hello again everyone i have now reached 34 weeks with my little boy . scans are going well and apparently the gastroschisis is uncomplicated but he is still very small although my other two children were not overly big we are due to go in to be induced in three weeks now. I am very excited to be soon meeting my little boy this is a question to everyone really though my midwife says rhere is a chance that he may come before this as gastro babies tend to. Did anyone else not make it till their induction? thanks

34 weeks now is a post from: Gastroschisis

Looking for some personal stories about gastroschisis with liver exposed

Dean — Sun, 16 May 2010 02:05:36 +0000

My husband Ryan and I went to highschool together and found each other at 3o years old and decided that we were keeping each other! We got married on February 26th in Las Vegas… planning on having a public ceremony shortly after. Plans changed…we both wanted a family and found out on April 14th that we were two months pregnant. We were extremely suprised but both extremely thrilled. At our first ultrasound they had no concerns….but when we had our 3month ultrasound the ultrasound specialist looked concerned and asked me if I’ve been bleeding…I answered no. Then she left the room and returned with our OB/GYN. HE said that our baby had a abdominal protrusion and he needed to send us to a specialist. We went to the specialist that evening and he said that it looked like a Gastroschisis however he wasn’t used to seeing the liver protruding as well.. I’m terrified but trying to stay positive. I need encouragement and have read stories on here and felt I may find a support group here throughout my pregnancy. My husband and I would like to ask if any of you have experienced a similar gastroschisi. They said they will be doing a MRI at 18 weeks to be able to see what is going on more clearly and then a amniocentisis. I don’t think I want to do the amniocentisis because it would add extra trauma to the baby’s situation don’t you think?? It sounds SCARY. If any of you can offer me a story, information, photos or anything. I’ll be ever so grateful. I am trusting in God…..it’s tough sometimes when I see the hundreds of babies that look soo healthy I think “why did this happen!” Please…just connect with me if you can. Thank you.

Edit: Story originally posted by stunner312

Looking for some personal stories about gastroschisis with liver exposed is a post from: Gastroschisis

I was born with Gastroschisis

Riley_Grace — Wed, 28 Apr 2010 08:31:30 +0000

Hi, I’m Riley.

I am 14 years old and I was born with gastroschisis. Obviously, being as young as I was I can’t remember a thing. It hasn’t effected my life stle. I live a completely nomal teenage life. I don’t have to have check up for it or anything. Everythings, well.. normal I guess.

Although sometimes I am a bit embaressed 0f my scars, but alot of my friends think it’s really cool. I have 2 scars. One where my bely button is suppost to be and another just above my underwear line. I had 3 surgeries and was in the hospital for about 3-5 months. No, it hasn’t changed the way I have to eat or live. I eat more then most of them.

Some of your childern in future may want cosmetic surgery to get the scar fixed up, but I don’t want it gone. I honestl think it’s prett cool myself. It makes me different to everyone else in my own special way. No body I know has my scars or has had gastroschisis. So it makes me unique. And I like it that way.

Wishing you all the best with your kids,

Riley.

I was born with Gastroschisis is a post from: Gastroschisis

Now 16

Betty_Boop — Mon, 12 Apr 2010 03:12:51 +0000

My name is christine i am 16 though out my school life i got picked on for my scar yeah im not gonna lie it gets me down all the time you know the ones like “your a clone ” “test tube baby” i have heard them all and much worse then one day i came homw and my mum gave me this piece of advice and i will pass it to you

That scar make you who you are it makes that specail person that stands in the mirror and says nothing will stop me and no-one can get me down so don’t let it.

So PLEASE don’t let it get you down we are all very specail

Now 16 is a post from: Gastroschisis

has anyone had re-constructive surgery as a teenager?

hollysissons — Sun, 11 Apr 2010 20:03:53 +0000

My name is Holly and I am 17 years old and was born with gastroschisis. I was left with no belly button and a rather long wonky scar down my stomach which hasn’t really caused me any problems up until now where it is making me quite self concious. I have had a consultation with a surgeon when I was 14 who told me surgery would be available to me to re-construct a belly button and to tidy up the appearance of the scar. I am considering having a gap year before going to university and would like to know from anyone around my age who has undergone the surgery. I would really like to know what is involved, how long the recovery process is and whether the surgery was successful and worth the operation. I hope there is someone who can help answer my questions. Before and after photos would also be very helpful! Thank you.

has anyone had re-constructive surgery as a teenager? is a post from: Gastroschisis