5 mo preg, baby has gastroschisis, looking for support/advice/personal experience. Thanks everyone!

Jessica - posted on 11/12/2010 ( 3 moms have responded )




I'm expecting my second baby in April and just found out that she has gastroschisis (where there is a hole in the belly and some intestines are out of the body) I know it is correctable with surgery just after birth, but I'm still freaked out about it. I just wanted to know if anyone else has had experience with this and maybe some advice on how to not worry about it constantly for the rest of the pregnancy. I'm so sad that I will have to see my baby with tubes and IV's and won't get to hold her and bring her home. I get upset every night especially. My husband is very supportive, but I know he's already tired of hearing about it and I know it's not good to be depressed now. I'm just looking for support, I guess. Thanks.


Ashley - posted on 06/09/2016




I'm Ashley and I'm 23 I found out I was pregnant when I was 22 and after being with my boyfriend for 1 1/2 years we were scared but excited about our new bundle of joy as soon as we found out all the excitement starting flowing in of a new child from thinking about names to wondering what there little face will look like to how we wanted to raise him but we never thought about the fact our baby might have something wrong with him everything seemed fine I had no sickness I was just exhausted but everything seemed fine when your first pregnant the biggest fear I had was a miscarriage but at 19 weeks we had our first ultrasound although we already knew we were having a boy from a harmony blood test we did wich should no defects and and that he should be a healthy baby so me and the dad go to the ultrasound so excited so see our baby and the tech seemed kind of vague and like she wasn't telling us something was just saying that she was going to schedule us to have a 3D so we could see things better because Cooper (baby's name)was moving a lot making it difficult to see things but she ddnt say anything bad so we were happy nothing was wrong a few days later I get a phone call while I was at work from my doctor wich automatically is scary right off that bat because no news is good news is what I always went by he starts off by asking me how I was and then breaks it to me that my baby has gastroschisis I broke I was crying and so scared not knowing what that was and just freaking out because my poor baby had something wrong he explained to me it's a small hole in the baby's belly that the bowel comes threw but that nothing else was wrong with my baby (like that's not enough) and he seemed healthy otherwise I was heartbroken I had no idea what this meant I ddnt know how to feel besides helpless because I had no control over this situation I could do nothing but prey and wait for answers.
My boyfriend took off work and him and I headed off to the doctor the next day to talk and really learn more about the situation everything was explained to us that this is a defect that has no relation to any other defect and most babies born with gastroschisis would live a healthy life after a surgery and a stay in the nicu but also the negatives of a higher chance of a still birth or miscarriage and pre term labor It was all so overwhelming started scheduling appointments for weekly ultrasounds and high risk doctor appointments and trying to stay strong and sane threw the whole thing so many days I spent googling the defect and reading all of the horror story's and watching videos and breaking down lots of breaking down not that us pregnant women are not emotional enough lets throw this in the mix. I started seeing a doctor at Cardinal Glenon children's hospital (wich may is say is a blessing of a hospital) they helped me threw the ending of my pregnancy with people to talk to about how I'm feeling and making me feel like things would be ok I still had my doubts that I might lose my baby and just feeling so scared for him and wishing I could just take it all away and make him ok.
I was schedule to be induced at 37 weeks because going full term with a gastro baby is not the best because it leaves more time for the bowel to be damaged by the amniotic fluid. This whole pregnancy was just so hard to enjoy because I was so scared the whole time I felt so helpless everyday but I had to keep hope and stay strong for my baby and just hope for the best that he would be ok.
It was the week of my induction date and my nerves were shot I was worrying about everything and just so stressed out by tried to stay relaxed so he would be calm and my belly it's now Wednesday 2 days before my appointment and i woke up like any other day and was planning to get lunch with my best friend and do some shopping with her but something didn't feel right Cooper wasn't moving wich was very weird for him he was a very active baby in the womb always kicking and punching but today nothing I tried everything ice chips sugar and laying on my side but nothing he just wasn't moving I was getting scared but tried to relax so I went with my friend hoping everything would be ok when I got home I started getting really scared I started having pain in my back and he still hadn't moved so I call my doctor and my mom and we all decided it was time to go to the hospital my boyfriend was at work so I called him to let him know what was going on mind you I had done this before where Cooper wasn't moving and went to the doctor but this time was different but my boyfriend wasn't thinking to much of it but he was always there for me so he was on his way home so he could meet me and my mom at the hospital. I was so scared going in just hoping they would find a heartbeat but for some reason felt extremely calm bu the time we got there they got me back right away and started looking for a heart beat wich they found immediately I was so relieved that he was ok but still worried because he wasn't moving still it was now 4 pm needless to say they admitted me and hooked me up and I was having contractions but only dilated to 1 1/2 but they decided to just go ahead and induce me anyways because he wasn't moving and because of his defect they just wanted to get him out so it began the longest days of my life they started by putting medecine on my cervix to soften it and that took 12 hours then it was time for potosin and the oxygen mask and the epidural the pain was to much I gave in and got one it's now Thursday night yes 24 hours later still going and now my epidural had slipped out and hear came the screams and tears again and finally they came in and out another epidural in and I could relax but was so extremely exhausted and now babies heart rate kept dropping is they gave me medecine to stop labor and he was fine so they tried again with more potosin and there went his heart rate so it was a back and forth game of this until about 2 in the morning then all of a sudden a group of doctors start pouring in my room with all these tools and the doctor told me the thing I really ddnt want to hear we are going to do a c section because labor wasn't progressing and baby was under stress I was so scared but there was so much going on I couldn't even process anything my boyfriend was putting on scrubs I was signing papers and then I was being wheeled down the hall next thing I knew they asked dad if he wanted to see his little boy but they wouldn't show me and I ddnt hear any crying and I was passing in and out just asking where my baby was and why he wasn't crying but they already had my baby in a different room 4 min between the time they cut me till now but it felt like a lifetime they brought me back to my room and still I hadn't seen my baby or heard anything about him about a hour later hear they come with my baby I could barely see him he was still all dirty and in a incubator but he was perfect and I just wanted to hole him so bad but I couldn't and they took him to Cardinal Glenon he had stopped breathing and needed compressions and more than his bowel was out his liver and stomach were on the outside to but it's almost a day before I could go see him when I finally got to see him he want moving they had him sedated so he wouldn't move I was so happy he was here but so heartbroken seeing him like this but they were able to get all his parts back his stomach and closed up as soon as he got to the nicu so i was so happy that he was so lucky to not have to have a procedure after 2 days they were able to let him wake up and take off the oxygen and then it was the best day of my life when they out my baby boy in my arms and I felt that overwhelming moment where I got to look at my boy and hold him and kiss him and nothing else in the world mattered in that moment.
And so it began the journey in front of us where we had to wait for the bowel to start working and moving thing threw and for him to poop before he could eat he had so many wires and tubes it was hard watching him be poked at and thing shoved in his throat and going home without my baby but I knew I had to be strong for him in this moment it was so hard hearing him cry knowing I couldn't be his mom and do anything but hold him and love him finally after 2 weeks he pooped never had I thought I would be so excited for poop and I thought well he's better now let's go home but no still he had more to do he had to start eating and digesting and pooping all on his own I had been pumping so I had stored up quite a bit of breast milk for him cuz I new it would be best for his sensitive little tummy after 4 weeks he was eating and pooping all on his own and we got to take him home it was the longest month of my life but he was so strong and so lucky and survived this and was ok and was coming home.
cooper is now 3 months old and has had no issues he even has a little belly button. I know I'm a lucky mom to be blessed with such a strong little man who taught me so much and such a little time that the things I used to stress about weren't so bad thing could be much bigger than me and all you can do is put your hands up and put your faith in something bigger than you and hope for everything to be ok I decided to wright this and put it out there because when I was pregnant with my little one the only thing I could find was horror story's and never a happy ending so I wanted to give hope to those moms out there that are finding out the news of gastro about there little one and are scared and confused about why this happened and they need to know they are perfect and it's not there fault and things can be ok it is a journey but these little people are so much stronger than we think and they can get threw this and be ok and the world of medicine is so advanced and amazing what they can do.

I have to throw in that my nicu nurse Diana was the best thing in the world she was so caring to baby as if he was family to her and treated him so good not like a patient but as family she was there to talk to me and make me feel better and I will always be thankful to her and love her as a part of my family

To all you moms out there
There is hope you have strength
And your baby is so much stronger
Than you would ever think


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Kayla - posted on 11/17/2010




one of my good friends daughters was born with this and she had to spend the first i think it was 2 month in the hospital but they got to visit her whenever they wanted to and the hospital was VERY awesome to work with...when she was old enough to get the intestines fixed the surgery went PERFECT and she's a healthy baby girl well now 2 running all over the place...so you have nothing to worry bout! just be there to comfort her and you and your husband need to be there for each other.

Lisa - posted on 11/13/2010




First off congrats on your pregnancy. Youre pregnant and found out there is something wrong with your baby its impossible not to worry as mothers its what we do. Your husband needs to understand that you are carrying this child inside of you and doing everything you can to make sure she is healthy and then you find out she isnt so of course you are going to be upset about it and he shouldnt be sick of hearing it because if the roles were reversed he'd be freaking man cant handle thing the way we do and Im sure he is just as scared as you are he just cant express it. Try not to be depressed but nothing is going to make you stop worrying. Even if she was perfectly healthy you would still worry. God knows I did through both my pregnancy and now my daughter is 2 and my son is 3 months and I still worry every day about something. Try to keep your head up and remember you need tp think positive right now. if not for you for your first born. Children can feel when something is wrong and they may react badly to it. Good luck and I hope this was a little bit of help for you

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