View Full Version : Pregnant: Baby has Gastroschisis
03-30-2009, 12:51 PM
Hey everyone my name is Rachel and I will be 32 weeks this thursday Im excited and nervous and feeling quite blessed...But everyday I wake to the harsh reality that my baby has gastroschisis its when his intestines protrude out of his abdominal walls, it kills me because noone knows what causes this except that all of the fetus's chromosomes havent placed themselves properly together leaving this hole exposed in his lil belly.
When I first found out I was devasted and heart broken I felt like it was my fault I even asked wha did i do, what could i do to help him but all of their answers left me in the dark, It wasnt nothing i did and there isnt anything i can do to help him, except continuing being healthy an going to my appointments. When my babys born he will be taken directly to the nicu...I will not even get a chance to hold my precious lil boy, hes my first and it kills me because I love him so much I long for that moment where I can hold him and just smell him and coo with him, I hate it when I hear of mothers that dont even appreciate their newborns, I have to wait 2-6 months before I even get a chance to take my lil boy home, sometimes i feel like its not fair, i cry all the time to myself just because I feel like I will be missing out on his first glance into this world.
It kills me even more to know that he wont even be able to eat properly until well after his surgery, yes into his first day in this world he will be operated on to correct his gastroschisis and than a second surgery is in due to correct the placement of his intestines, I want to breastfeed so we're going to store my milk til hes able to digest and make bowel movements which can take well over a month.
My message is not only to educate, but perhaps even hear from moms of which are in my same predicament and know how I feel. Also to let moms especially moms of newborns to appreciate their lil bundle of joy and those that are pregnant take advantage of that chance you get to hold your baby when he or she is first born, no matter how tired or weary you are look into your babys eyes and allow him or her to know that you are thankful for them being in your life.
03-31-2009, 01:41 PM
Oh honey I am so sorry that you are going through this I can't even imagine. Don't worry about not getting to hold your baby right away you will be able to bond in time. I had a really hard 32 hr labor that ended in a c-section and didn't get to hold my baby or really even see her for hours it was hard and I was scared that she wouldn't be able to bond with me once I did hold her. I was soooo wrong she knew who I was she had heard my voice for nine months. she's almost a year old now and can't bear to be away from me.
You and your lil guy will be in my prayers. Good luck and enjoy the rest of your pregnancy. Try not to worry god will take care of you and your lil one!
04-02-2009, 10:21 AM
Thank You so much for the reply I really do appreciate it and I cant wait to get to the stage your at now in your mothering where your lil one cant get enough of you! Last night me and my fiancee were talking about how much I worry about him not bonding with me due to his hopsital stays length but than I commented on how I'll be able to recover for the rest of his life! lol I dont think I would ever want him away from me, just as any mother wouldnt, Im just really excited about being a mommy I'll just keep on being strong and holding on to what I have.
We had placed his nursery in our room so now every morning when I wake up I look to my left and I see this beautiful set up for my son, we even put up the crib and his sheets and everything It just brightens my day to one day know that when I do give birth and he does come home he'll be the one to fill that crib with love, laughter, and just pure joy!
04-21-2009, 01:26 AM
I know how you feel, my first child was born with gastrochisis as well. I found out when I was 14 weeks along. I delivered and he was rushed away for surgery. They could not replace all of his intestines at one time so they made a "silo" and gradual pushed the bowel back in place. Due to where the intestine was twisted he also had his ileo-cecal valve removed and had an ileostomy for a little while, which was reversed. Now he is 3 years old and just as happy and normal as any other. Hang in there its a tough road, but its worth it. Good thinking storing your breastmilk, thats what I did and I truely believe it played a huge role in his quick recover. If you ever need to talk, feel free.
04-21-2009, 10:02 PM
As a parent of a child with special needs, I know its emotional hard. I suggest going to youtube and viewing the video "Welcome to Holland" it helps to understand that although the road is hard and not planned, there is still alot to enjoy. Also call early intervention now for a referral. Have therapy set up right away so he wont be behind on his development! Good Luck!
04-30-2009, 01:18 PM
My name is Leaha and I am a 27 year old mother of 3. I can not say that I have gone through this myself, but when I was 13 my step-mother gave birth to my baby sister who was born with gastroschisis. She was born full term and at a normal weight. I am writting you to give you some hope. As with any severe condition Ashley spent lots of time in the hospital, but she is now a well thrivng 14 year old girl. She has a hard time with the scars because kids don't understand. The plus side is she doesn't remember any of it. She plays softball, volleyball and had been a cheerleader, she is very hard to keep up with. The only thing that was hard for her was her speech, because she was fed through a g-tube for a long time, and had to learn to use her mouth. She walked and crawled a a normal age. I spent alot of time with her taking care of her so i am well aware of what it takes. At the end of the day you don't think about all that is wrong, you think about this wonderful child that beat the odds.I'm not saying that all cases are this way, but what I am saying is there is always a silver lining and never give up.
05-15-2009, 11:45 AM
i understand what your going through.... Just yesterday i had my first ultrasound and found out my baby had gastroschisis...im very sad and reading your feelings made me want to be strong and keep on forward.... Im 12 weeks and 6 days ...... Hopefully you feel better but yes its hard to know your little love is having dificulties...
05-19-2009, 09:34 PM
I too just got a call from my Dr. that told me that my baby may have gastroschisis I have to go for another sonogram to confirm.. I am scared... We did invitro because I have NF-1 and didn't want to pass the genentic disorder on. I wonder if them taking out a cell to test for the disorder has anything to do with this. I am terrified. I told my husband and he is sweet he said we will get through this.... Just don't even know where to begin.
07-13-2009, 02:52 PM
Hi, my name is Sabrina iam 19 and married I have a 1 and half year old son named Noah who's healthly and handsome, but my husband and I found out I am pregeant again and iam 30 weeks today and we are having another boy sad but happy too I wanted a girl but am glad my son will have another boy to play with, my husband and I just figured we would try for a girl later on in like another 2 or 3 years from now, but then we got the bad news our new son to be has Gastroschisis and I just found out last week my private doctor knew and never told me until I went to my second ultersound somewhere else at Dr.Hills office they told me the bad news my doctor I dont know really if he knew about it he did ultersounds on me so I dont know if he didnt see it which scares me to know hes a doctor and didnt know about it or he just wasnt going to tell me. I very angry at him. I dont know what to say to him I have doctors app. tomorrow. I cryed and cryed and cryed and am still crying, I have seen on tv and heard about it but never knew anybody with it or never thought in a million years something like this could happen to me. I am angry and sad, I just dont know what to do or if I can handle see my baby like that. I dont know if I get to hold him or see him right after hes born or will be on a breathing machine nobody will give me answers I am lost and need help please if you can answer any of my questions I would be so grateful.
07-31-2009, 08:53 AM
hi everyone... i am not a mother to a baby with gastroschisis, but i am 22 and was born with it. i was born full term and they missed it on the ultrasounds so i was born and the dr and my parents were completely shocked. my mom saw me for a minute before i was literaly seran wrapped and shipped to yale to have surgery.
i had 2 surgeries and a feeding tube. my dad said he was scared to see me like that being their first born and everything. i have seen pictures and i had tubes out of every limb. and i was all taped up. BUT i promise it looks so much worse than it is.
growing up i had a hard time with being constipated. but that has gone away. i can't eat alot in one sitting but i really am healthy. my main concern right now is if i can have kids. that is due to the scar tissue from my surgery. but moms it will be ok. with todays technology the surgeries are better, the scars are smaller and with detection before birth the planning helps. if you have any questions on what your baby may go through feel free to ask
07-31-2009, 08:57 AM
sabrina i can answer all your questions. kinda lengthy... my email is firstname.lastname@example.org feel free to contact me and i will answer any questions. i have been through it personally being the patient with gastroschisis as well as medically. i am a radiologists assistant and specialize in ultrasound
08-06-2009, 01:19 AM
I gave birth to a beautiful baby boy on the 8th of April 2009. Bailey had gastroschisis aswell. My story did not end happy, but I just want to say that you all are brave women whom love there child/children endlessly. I won't lie to you it's been a rough year emotionally. My advice is to make yourself known of all the risks and be aware of everything, don't put your head in the sand and expect the best all you can do is have faith in the medical system and yourself. The Doctors and Nurses at the royal brisbane were the best. We were part of the 10% I hope that you are all part of the 90% and your children go on to live happy health lives. My heart goes out to you all. Keep the Faith ladies and be true to yourselves! Goodluck
05-28-2010, 11:52 PM
I went through sooo many of the same feelings when i found out what did i do wrong when did i do it wrong i knew i was pregnant before i was even 6 weeks so early and immediately started taking prenatal vitamins and doing everything right...then i go in and find out she has gastroschisis... I was crushed i didn't understand why other women who took drugs and didn't things right aren't going through this and i am i did everything RIGHT!!!! And someone told me God only gives you what you can handle those women wouldn't be able to handle it and it helped some. At 18 weeks Lorelai still had just intestine out and everything fortunately remained the same way until 35 weeks...i went in for first of my twice a week appointments and it was not two seconds like usual, then i was told to drive across the street and not eat or drink anything i was going to have the baby...I still had no idea what was going on and at this point i was still going to be having a natural delivery...but got to the hospital and found out i was going to have an emergency c-section...I found out when my fiance was got there that two organs had come out since my thur. appt. to my mon. appt. Her liver and stomach were now out...This sent me back to the day i found out... After she was delivered Matt saw her for a little bit got one pic and then that was the last thing i remembered until i was on the gourney meeting her for the first time in the hallway she was in her incubator getting ready to be transferred to Scottish Rite Atlanta to have her surgery. She held my pinkie through the glass and that was the only contact i had with her until 3 days later it will not be easy u will be crazy emotional but u will survive and remember you are a strong woman and will only get stronger and every moment now 3 years later is a million pictures i remember every step every wave and smile she is sooo etched in me it's incredible.. she was in the NICU for 2 months even though she was 7 lbs 14 oz at birth and was 5 weeks early. Her surgery only took 30 minutes to place everything back on but she was in surgery for almost 2 hours b/c her surgeon re-did her belly button 3 times to get it perfect :) And it is half inny half outty is what we like to call with an inch or so scar line. It is just another reminder of how strong she is much braver than me i know that from day one. We were not able to hold her until about 4 weeks it was really hard to cope with for us and we are planning on starting trying for #2 in april of 2011 and i am nervous because all these feeling will flood back when i do get to hold baby 2 immed i am going to ball....as i am now... I pumped and my supply decreased due to not having the "bond" being able to hold her etc so had to take pills to increase my supply it helped but by the time she was actually able to try to start feeding she was over a month old and wouldn't have it so i was not able to and i truly wanted to so another thing i missed out on. I had no idea what to expect going into the situation but i would not change my little princess for anything she is incredibly intelligent and independent and my absolute miracle... you will get through this and again it will not be easy but i made it through at 22 and i just don't want anyone to sugar coat it i was told oh it will be fine yada yada it could have not been we were fortunate 3 items to be put back in no amniotic fluid damage and the only long term as of now was horrible reflux until about a year and a half ago and constipation on and off. Enjoy every moment that you can cry as much as you can to get the feelings out. Talking to other really helped me knowing what they overcome and their situations i feel helped me not go crazy... Most importantly DO NOT blame yourself!!! After we found out and were telling people we found out a friend of ours was born in 1963 with gastroschisis and she is a very healthy adult with no complications and her mom bascially delivered her and was told to kiss her bye...given none of the technology we have now...it was amazing hearing her story and comforted us tremendously...i hope some of this helps u it still seems unfair to me i won't lie and i still think about if anything was diff would this have been diff but then i remember they don't know the cause and given it's been around sooo long there is no telling and i can not prevent this from not happening again ither...but if it does i will be more prepared...Wish you all the best and CONGRATS!!!
03-14-2011, 09:20 PM
I am 30 weeks pregnant and a SAHM to a beautiful 4 year old little girl. We got the diagnosis of gastroschisis for our second daughter at our 12 week checkup. Needless to say, I fell apart and had no idea how I would have the strength to get my family through something like this in one piece. Obviously after a few days of crying constantly and falling apart at the drop of a hat, I pulled it together and went about my pregnancy just trying to do what I could to prepare. Well, the pregnancy has been further complicated by the baby continuing to fall behind on weight, and my amniotic fluid staying consistantly low. So when I went to see the specialist for my 29 week checkup I was immediately admitted to the hospital bc my fluid has reached the point of being dangerously low and the baby is showing signs of distress. Her heart rate drops when i put any pressure on my belly because it is compressing the cord, and her movement is very decreased. So I was admitted to the hospital, and steroids were started in preparation to have to deliver early. My baby is only 2lbs 2oz at this point and it terrifies me to think of her having to battle being a micropreemie and the gastroschisis. With being on such strict bedrest and away from my home and my family I am feeling incredibly isolated and anxious about what is to come. The goal is to get the baby to 32-34 weeks and 3lbs but everyday we risk being told that we have to deliver based on how much distress she shows. I would love to be able to talk to other mommys that have been through this or are currently going through the same. I will be the first to admit that I am a complete control freak when it comes to my family and my home and I am not handling this well. I need to be able to talk to someone that is in my shoes!! I feel so alone in all of this! Im beginning to wonder how my husband and I are going to get through this in one piece, it is definitely stressing the relationship to the max! Please feel free to email me Rebekah0207@gmail.com
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