hi i can relate to a lot of you i was 18 wen i fell pregnant and soon found out my son had the condition i was very upset and confused the birth was an emergency c section and i was so upset i found that day was the worst even though it was suppose 2 be the best day ever, he weighed 5lb 5oz and was taken straight off i only saw him for couple mins and never saw him for 3 days after i was devastated i harassed the nurses and was finally allowed home. ethans time in hospital felt like forever even tho he was only in for 4 weeks.
Anyway i would like to know if any1 else who had a child born with this condition has had any other children and how fings went i rely want to try for another child and am so frightened incase it happens again even though it went well the whole birth has left me terrified to do it again any advice or know where i can get any info from
fanks zoe x
I am not sure what to do anymore. My son is now nine weeks old and is still in the hospital. He is eating breastmilk okay. He is on tpn and lipids through his central line. He is now up to 50 ml every three hours. I am very upset about what needs to happen before he can come home. This past week the doctors wrote orders to put him on Similac Sensitive formula. I was confused but did not get to talk to the doctors about it until the next day. When I did the nurse practioner said she didn’t realize he was on breastmilk. I am very concerned that the doctors did not remember this. There are only 3 nurse practioners and i understand that they see alot of patients, but they have the chart when they write the orders. Do they not read it? What kind of care is my son getting if they can’t even get this right. When i brought it to their attention, they of course switched him back to brestmilk. And I don’t understand why they are expecting him to never spit up. Every baby that i have ever been around does it. If they are waiting for him to keep all food down then we will be waiting a really long time. And we need to get off tpn and on to only oral feeding. They calculate the tpn on his weight and age. They ue this eqation to get the amount of food he “should be eating” based on a “normal” baby’s weight and age. But he is not a “normal” baby. So if he is continuing to gain weight while getting older of course, he will need more tpn based on their equation. The fedings are not incresing as fast as his weight and age are. And today i find out by reading his chart that they may consider a g-tube, which seems a bit drastic for the situation as it is now. He is eating orally and keeping it down well. He just isn’t eating as much as they say he should. So what should I do now? I just wanted to know if anyone has had problems like these.
hi im natalie i have a son who is nearly 5 and was born with gastrochisis he spent 4and a half months in hospital as he kept gettin infections and couldnt tolerate his milk since coming home he has gained weight and grown in to a active little boy but he keeps getting blockages in his bowels which the consultants are unable to explain why this keeps happening to him he is always on laxative medication and currently on suposotries and has to have manual evacuations to clear the blockage each time it happens he also can not control when he needs to go to the toilet so is still having to wear nappies and spends a lot off time off school as anyone out there experienced this with there child if so please could you leave a comment for me as i am really worried that this problem will never stop and scared off what the future will hold for him if this persists thanks
Hi my name is Danielle. I am 18 years old and 25 weeks pregnant. At 12 weeks my baby was diagnosed with gastroschis, in which i was sent to Kings College hospital straight away for a second oppinion. They told me everything about the condition and how it would be solved and asked if i would like to carry on with the pregnancy which i felt taken aback and hurt that they could even suggest it. Since they diagnosed me, i’ve had 2 more scans, one at 16 weeks and one at 20 weeks and my next is when i’m 28 weeks. At my 16 week scan they told me i was having a boy and they confirmed that again at my 20 week scan. They said that everything seemed to be going how they expected it to be and said they see no reason in seeing me sooner. I am finding it hard to cope with the fact that when my baby is born he’ll have to stay in hospital for a few months but its something i’ve gotta cope with as long as my baby is ok, thats all that matters! I’ve had a few other complications throughout my pregnacy so far including heavy bleeding and alot of pain throughout my body in which i have to keep going back to the hospital to get checkout out because i’m so scared and worried about my baby. I lost my mucus plug last week and since then i’ve been getting alot of pain in my stomache and back, it feels like someone is pulling on my stomache from the inside and i can hardly move when i get it. It stays there the whole time but it gets stronger and weaker at times. I’m really concerned about it but i don’t know wheather it is BH contractions, the real thing or just growning pains. I was just wondering if anyone else who is having or had a baby with this condition could help me out and reasure me about it. Thanks x
I was born in 1979 with Gastroschisis, my parents where told at birth I would never have children it took 4 years and I now have 2 beautiful children. I did not see a specialist, did it the old fashion way. I am wondering if as an adult any one has had any health concerns. I have had 3 abdominal surgeries to remove adhesions and have had my intestines relayed and my stomach re-routed. I was also made a belly button when I was 4 so when I went into kindergarden I had one like everyone else. Also after having my daughter I had to have a hysterectomy.
Jgonzales
Brady is now doing a lot better. He is getting bottle feedings again. His contrast study showed no blockages. He is slowly increasing in feeds and his tpn is decreasing as well. Still no word on going home, but we hope it will be really soon.
Our beautiful girl was born on 06/02/09. Amelia, diagnosed with gastroschisis at 18 weeks was delivered at 34 weeks gestation via c-section. 3 weeks anti-natel baby begun showing signs of distress so mother was admitted to hospital for daily C.T.G & ultrasound (photographed more than Elle Macpherson)! The delivery went well and the herniated small & large bowel as well as the bladder had maintained good blood flow dispite having a (crust) on the exterior walls from being in contact with the amniotic fluids. Even though being born pre-mature she came out screaming(the only time I have enjoyed that), and her birth weight was a couple of grams over 2Kilo.
At 6 hours of life she was stable enough to have an operation, her small & large intestine along with her bladder were compressed (like squeezing out that last bit of toothpaste from the tube – crude, I know) and pushed back into her abdominal cavity. This procedure took little more than 2 hours, she was left with about 6 sutures to the right of her belly button. There was no other disorder associated with the gastroschisis besides a slightly elongated stomach ( were the intestines were pulling on the duodenum) and some possible disruption to the kidneys, neither of which the surgeon was to concerned about. I was amazed that they could place back the entire intestinal tract in one operation, I was prepared for up to three operations or even using the “silo” method.
Now at 4 weeks post-op she has been introduced to mothers milk and appears to be absorbing (2-3ml hourly) and the green gastric fluids that she was aspirating appears to be diminishing from 25ml per 3hourly to 25ml per day. The balance of saline, intrepid and fat emulsions that they nourished her with has been reduced in accordance with her fluid loss. With the aid of suppositories she has had 3 bowel motions in the last week, YIPEE! We are all very keen to see peristalsis occur naturally and for bowel action return to normal – because that is when she will be able to come home.
Yet we are not out of the woods yet, after speaking with the surgeon yesterday (07/03) he indicated to me that it will be unlikely for her to return home for at least another several weeks, possibly many months, major bummer – I thought everything was going so well, but he thinks there might be an obstruction or twist in the bowel which may involve more surgery to correct. I understand gastroschisis is a extremely subjective complaint that has different outcomes for every individual who presents with it.
This is such a rare condition it is hard to find understanding. I’m glad I found this site, I understand and have total compassion for all your stories. I know everything will be O.K, it is just learning how to cope until O.K comes around! Would be grateful to exchange a point of view. Callum.H – Melbourne, Australia.
Originally posted by Gemma
I just want to say what a great help this site has been to me.
Our baby has been diagnosed with Gastroschisis. We were diagnosed at our 12 week scan. I had a scan 5 days prior to this as I had a bleed and it was not mentioned then. Anyway, the way the Dr told us was dreadfull – basically she said there is something wrong with your baby, we will refer you to Kings College ASAP and then you will have to make a choice about keeping it or not. We were so upset. We came home and looked up the condition on here and it made me feel so much better. To me it did not seem that bad after all. The next day we went for a private scan for a second opinion. They had a look and explained what it was and put our minds at rest reassuring us that baby was fine in every other way and this condition can be rectified at birth. Of course, they explained the complications that could occur but we are willing to face anything we have to face. I am so angry that the first Dr never took the time to explain what the condition was. We went to Kings College 4 days later and they said again the baby has this and is fine in every other way. They asked me to come back at 5 months for a scan – they did not seem at all concerned and don’t need to see me regulary until 6 months. The consultant said “sometimes we get it wrong”, this is the second time this has been said to me. I have read also that it is hard to diagnos this before 14 weeks as it is not until 13 weeks that the intestines begin to go back into the stomach. Has anyone been diagnosed with this earlier then 12 weeks? My last scan was done at 12 wks 6 days. Is there anyway that by the 20 week scan that this may no longer be the case? It makes no difference to me regardless – this baby is our world and we will be strong for it, but I am slightly confused. Should it be diagnosed at 12 weeks?
My name is Jennifer. I live in Knoxville, Tn. I found out at 17 weeks that my baby had gastroschisis. We had all the blood tests done that are reccommended. When the nurse called to tell me that one of the tests came back positive I was so worried. We did not know what was wrong. They said that i needed to come in as soon as possible to have an ultrasound. The next day I was at the doctor’s office. It must be bad if they brought me in the very next day. The ultrasound was nerve racking and bittersweet. It was the first time I would see my son’s face and wonderful little hands and feet, but I also wanted to know what was wrong. When we found out it was gastroschisis, we thought that it was not a real big deal.
The doctors, genetic counselors, and surgeons all said it was just going to be a bump in the road after the baby was born. I was at peace with the defect. It could be worse I said to myself. They all had different numbers for the amount of time my baby would be in the hospital. It ranged from a possible 11 days to 6 weeks.
I had to begin going to the doctors office every two weeks. I had an ultrasound at every visit. They did BPPs and growth ultrasounds. They all told me the baby would be on the little side. They watched his growth very closely and checked to make sure he moved adequately.
The doctors said there was a study going on with gastroschisis babies called amnioexchange. If we decided to participate, we would have an amnio where the doctor would pull out as much amniotic fluid as possible and replace it with sterile saline solution. They told us there was a possibility that it could help diminish the amount of damage done to the protruding bowels. We would do anything that might help our baby come home faster.
On January 20th our angel was born. The country got the first back president as I got my first son. He had a lot of bowels out, but they looked healthy. He was a week old when the bowels were in completely and his belly was closed. He got to eat pedialyte and breastmilk for about a week. He began to spit up quite a bit and the doctors decided to stop bottle feeding. He got a tube in his nose in order to get contiunous feedings.
That went okay for a while, but two days ago he began to spit up again. He is not getting any breastmilk at all now. They ave done x-rays and saw one area of his bowels that my be blocked or moving slowly. His h&h was low, meaning he was anemic, so he had to recieve a blood tranfusion. We are currently waiting for the surgeon to decide what to do next. Best case is to wait more and hope that the issue resolves itself, and worst case is to go in and surgically remove the portion of bowel that is obstructed. He will be six weeks old tomorrow, and I am ready for this nightmare to be over. I wonder if we will ever get our baby boy home with us where he belongs.
