Gastroschisis

(gas.tros.chi.sis) Support and Resources

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  • May-1-08

    my daughter had gastroschisis

    Posted by slade2sleney

    I have a daughter who is going to be 12 in june 2008. she was born with gastroschisis. i found out she had the condition at my 16 week scan. i was nearly 17 years old and single. she was born in Lewisham hospital and had surgery to fix the problem straight after birth.

    i saw her for the first time aged 8 hours old. she was fed orally for the first time aged 2 weeks and she came home aged 4 weeks. she is a happy and healthy girl who i still look at in amazement every day.

    She doesn`t have a normal belly button but is aware of her birth and why she has a different tummy button. i want you all to know…those of you who are expecting a baby with gastroschisis or have recently given birth…that its not always a dark tunnel. it will be a long and difficult journey but keep positive and enjoy your special, brave child who you are blessed to have.

    i am happy to email anyone personally. email me at sleney@hotmail.co.uk

    sherry sleney

    Apr-18-08

    im 19 with a little girl (5 months)

    Posted by Dean

    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

    Apr-18-08

    Gastroschisis daughter born 4th Nov 2007

    Posted by Dean

    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.

    Apr-18-08

    Kiwame Michael Wilson JR.

    Posted by Dean

    When I was 5 months pregnant with my son Kiwame Michael Wilson JR, I was told by my doctor the sonogram showed my baby had Gastroschisis. I was considered to be high risk.

    That means I was to be seen by the high risk patient doctor all through my pregnancy. I was going to the doctor office twice a week. My son was supposed to be born on November 17th 2007, but I guess he decided he was coming on October 10th 2007. I gave birth to a beautiful baby boy at 4:30 am.

    He weighed only 3 lbs and 5.9 ounces. He was my first child. Me and my fiance were proud parents to our son. The hardest thing was to see my baby with so many tubes inside his tiny body. But I knew they were there to make him better. My son had surgery on October 19th at 3:00 pm. I was told everything went great and he would probably be home sometime in December.

    On October 24th at 1:49 pm my phone rang and it was the hospital asking me and my fiance to come to the hospital. When we got there several doctors and nurses surrounded our sons bed. He didn’t look so well and his skin color was purple.

    Then at 3:05 they pernounced my baby dead. I was crying and in shock all at once I couldn’t believe my son had turned 2 weeks old the same day and died. I want to know why this happened when I was told several times he was ok and nothing was wrong with him even 3 days after his surgery.

    The only thing I was told is my son was not breathing to fast and hard. The doctor took us to a room in the hospital and told me and my fiance our son had a collasped lung, a infection in his blood, and pneumonia. I couldn’t believe that my baby had all these problems and just now they find this on the day he died.

    I want answers to how all this happened to a baby born at 34 1/2 weeks with Gastroschisis. Nobody I had spoke to about this birth defect told me any story about their baby or a baby dying from this defect.

    Nobody ever told me my baby would deal with these complications after surgery. So I want to know why all of this happened to my son who was only with us for 2 weeks and then died.

    All I have left is my son ashes, pictures, and my memories of his birth, his touch, his smell, his facial expressions, his beautiful eyes, and his smile. It’s only been 3 days since he’s been gone. I don’t even have his ashes yet. But I do know I will never forget my first born Kiwame Michael Wilson JR.

    I Love You and will always think about you. Goodbye my son, my baby, MY LOVE!!!!!!!!

    Gastroschisis: crying Kiwame Michael Wilson JR. Gastroschisis: crying Kiwame Michael Wilson JR.

    Apr-18-08

    George

    Posted by Dean

    At one of our earliest antenatal appointments the midwife said “Your AFP results have come back a little raised, this is nothing to worry about…and its nothing to do with the baby, you may be at risk of pre eclampsia later on, but we shall send you to the hospital for a scan to make sure.” In retrospect this statement was a little confusing, but unusually for me, I was quite trusting and thought no more of it until the day of the scan. Unbeknown to me at the time both my mum and sister were confused by this midwifes explanation and feared the worst.
    At week 18 we arrived at the hospital for our scan and the sonographer was extremely tentative and asked us if we fully understood why we were there. Due to the midwifes explanation we were quite noncholent and said that we did, but obviously, we did not. When the sonographer told us what she had found I think she could see we was not exactly prepared for this type of news and took us to a consulting room to speak with the consultant. First of all though a midwife came in and explained that she really didn’t know very much about the condition and said that it was highly likely that I would need to have a caesarean birth and quite early on. The midwife then left and in came the consultant whos greating was “Hello, isn’t it terrible news!” So now full of fear that this was a terrible thing for my baby to have, she then told us that she too didn’t know much about the condition but at one time termination was an option!

    I can barely remember the drive home, and when I arrived at work the next day my colleague sent me home as I was in such a state of shock I was no use to man or beast. Fortunately we only had to wait a couple of days to see the wonderful staff at Addenbrookes Hospital. When we arrived there the condition was explained fully by the obstiatrican, pediatric and surgical consultants. Obviously we were still concerned and worried but it was such a relief to hear that I would like have a normal birth and that our son would only be in surgery for about an hour and was 90% likely to experience no further problems following this.

    If I could say to that the next 6 months were hassle free I would be lying! I hated being pregnant and felt ill all the time, but in terms of the baby’s health, all of our scans were good and he experienced no adverse reaction to his bowel. I was finally given an induction date for february at 37 weeks and 3 days gest. When we arrived at the hospital for the induction neither of us had slept the night before through the sheer excitement. We waited patiently in a delivery room from about 9am wondering when our time would come. At 4pm a doctor came to tell us that there were no cots available in the neonatal unit and so we should go home and come back the next day! Obviously this was another sleepless night!

    We arrived back the next day at 7am as instructed and waited… and waited…. before being told it was likely that we would be sent home again as still no cots were available. At 2pm I started to get very stressed and packed up all our bags and informed the midwife were off! She asked us to hang on as the consultant was on his way to see us. Fortunately we waited and when he arrived he stated that he had negotiated a cot on the pediatric intensive care ward and the induction would commence after all! What a relief!

    And so at 5.30pm it “all kicked off” and at 6.30 I went for a walk around the hospital. At approx 7.00 my contractions started. Turns out I hated birth too!! The rest of the night is blurry in parts and totally unfathomable in others. Do not talk to me about birth plans, the thing might as well been ripped up and thrown out the window. I took gas and air, the epidural, forceps, suction and an episotomy!!

    At 1200 the following lunchtime I remember being surrounded by a full team of doctors, surgeons and nurses yelling at me to push, but I just couldn’t give any more. I heard the head consultant saying that I had gone too long and that I needed to be prepped for a c section. I was so disappointed and looked to my husband for his help to say ‘No!’ but as I looked around he was welling up and looked in such a state of shock and anxiety that I decided to give in and let it all be over for his sake. However, an other doctor insisted that he only needed a few more minutes and that he was certain I was moments away, and so somehow I managed to summon up some strength and pushed once again. With the help of the forceps and suction George was born at 1215pm weighing 5lbs 13oz.

    I was handed him for 3 seconds, and all I managed to do was look at his little face, and then conciously looked down at his bowel to check the colouring (after reading a post on here by another member). It was a lovely pink colour and I remember thinking “he will be fine!” My husband left to see George in the Neonatal unit and sign all the consent forms, and within minutes all the doctors and nurses left too and I was left alone, still confused by the happy, thinking “Oh party over!”

    George was operated on within 2 hrs and after the op he was off the ventilator within 1 hr. The staff were amazed. We went to see him in PICU and he was so small and hungry! I am not sure if it was the lack of contact I had had with him at this stage or the happy were still leaving me a bit dazed, but it just didn’t seem real and he certanly was stirring an emotion in me but he didn’t seem like he was mine. But that night when I went back to the ward and my husband went to his room, I was left alone on a ward with mothers surrounded by their babies and it was the worst emotional pain I have ever felt.

    The following days were tough and I don’t think I have ever been able to express to anybody how they really felt, you will all know of course, but George was doing well and needed very little nursing care in all. By day 9 I was given the opportunity by a wonderful nurse to try breastfeeding. She saw how strong Georges suck was on my little finger and said there was no harm in trying. George took to it straight away and we were discharged 3 days later!

    All the staff said that they had never seen a gastro baby do this well and certainly to be going home so soon and breastfeeding exclusively was no mean feat.

    We have been home nearly 7 weeks now and it has been hard. George wants to feed every hour of the day and sleeps very little. Yet he has been slow to put on any weight. He is now 6lb 8oz after 2 very good weeks, but has now been given Infatrini to assist. I am still breastfeeding and love doing so, and I am a sensible well adjusted person, yet I do still feel guilty that I can’t give him all he needs. I do find myself saying sorry to him a lot, and my husband asks me what I have to be sorry about!

    We have visted an osteopath twice now as I was concerned about the amount of sleep he was getting and the constant painful crys, and I do think that that has helped, although he has been poorly this week, so he may just be having a rest from the crying until he gets better but I’ll let you know.

    Having seen the surgeon today for his follow up appointment he is very happy with Georges progress and the only thing of any note was that he now has a small umbilical hernia, but that will heal in time and is very common in a ‘normal’ baby.

    And so now I am just waiting for a normal life to begin, but I expect I’ll never stop worrying about my little soldier!

    Apr-18-08

    New here

    Posted by Dean

    story added by froggieandone on 14 May 2007 within the Gastroschisis Birth Story category

    Hello all My name is Kymmy My son was born 3/21/03 with gastro he is doing well now we have had alot of set backs in the begining with hernias alergies you name it.

    Well He is truly a miracle I was supposed to have reconstructive surgery on my uterus before I could carry a child full term

    (I had 9 miscarriages before he came long) they needed to take a tremendous amount of scar tissue out. But when I went to the hopsital for a severe migrain  and stomach pains the told me I was 3 weeks pregnant, I was happy at first untill I realized that,”Hey why am I getting excited and happy I wont carry for long”, So the docs put me on bedrest. I was doing well until I hit the middle of the 3rd month then

    I started having contractions and spotting right away I thought the worst, but the docs put me on meds to stop the contractions and steroids for his lungs I went in for contractions at least once a week so they would mess with my meds. I lasted until 8 1/2 months then was rushed in for an emergency c-section cause his heart rate dropped dramaticaly then went almost off the charts.

    Well sorry I went on and on but I love my little miracle and am very lucky to have him and he is doing so well. Thank you for listening to my story and I wish you all luck and am here if any one wants to talk.

    Sincerely,

    Kymmy

    Hi my name is Danyel and I live in NC!

    But I was born In Iowa in 1972 and I was born with this defect. I was only a 3 pound baby and that was along with all the IV’s and all the surgical garb. I had quite a few surgery’s when I was a baby and I also have my battlescar on my belly!

    I had no problems until just lately I started having servere stomach pains and I noticed that my belly felt like I had a ton of gas and the dr had me go get a ct scan and found out I had a incarsarated hernia and an upper intestine blockage! Stemming from my birth defect! I had this done last year!

    Yikes now it can get scary with this kind of birth defect since Dr’s don’t know what they are going to get into until they cut me open! And with all the scar tissue and not knowing if all the body parts are in the right area, very nerve wrecking!

    Luckly my Dr’s at the Universary of Iowa Hospitals did such a wonderful job on me when i was a baby all my stuff is in the places or there about! When I was a baby they put a mesh in me that the dr built up my stomach walls and I remember that when I was little I was preached about not getting hit in the belly area or I would Die! I had no stomache muscles to protect my inners.

    Well I hope I helped a little I am now 35 years old and doing well! I am married to a wonderful man who dosen’t mind the scar at all and loves me for who I am ! Gastroschisis: angel I am 35 and I also was a Gastroschisis Baby
    Danyel

    P.S. If anyone has this birth defect please email me maybe we can chat! I would love to meet sum people that I can relate to with this Birth Defect!
    coolhippychic@aol.com
    Let me know it’s about this subject or it may end up in trash! TY

    Apr-18-08

    gastroschisis

    Posted by Dean

    I don’t understand how this happened to the child i am carrying…..i ask myself could i’ve prevented my baby from getting this thing called “gastroschisis”??

    So the doctor’s tell me it had nothing to do with what i did; it just happens 3 out of 9 pregnancies…..well, the next step…try and read up on the babies birth, care, after care, coming home….where is the info i need??  i want to stay positive, and how i can handle my baby on feeding tubes, surgery…i will.

    Please let my unborn (due 5/13/08) survive when i carry my precious 8-9 months through..i love you, and i don’t even know you yet……..

    I am 20 years old and i have a one year old daughter who doesn’t have any health problems and now i am now facing having a child with this birth defect.

    I am deeply saddened and i dont know what to do……..I am thinking about teminating my preganancy although I dont believe in terminations. I cant stand to see my child going through any kind of pain I am reaching out because I dont know what to do………………………