For those who didn't read that thread, I'm 18 and currently 22 weeks pregnant with my first baby. After my 20 week scan we got told that our baby has Gastroschisis and that his bowel is outside his (or her) body.
I've been referred to the Royal Women's Melbourne where the baby will be born and will require surgery to put his bowel back inside his tummy.
I've got an appointment for Tuesday, which is pretty scary. I'll be having a scan, and consultation with the doctor, meeting with the pediatrician and surgeon, and getting some information about Gastroschisis.
I'm really chasing some support, if anyone has personal experiences with Gastroschisis.
My partner and I are really lost and aren't sure what to expect or what to do.
Its really hard and quite terrifying.
I don't have any personal experience but I just wanted to wish you good luck for the appt on Tuesday have you started writing down all and any questions that come to mind so you can ask them at the hospital? It will probably be a pretty emotional and bamboozling day, so having Q written down might help. And maybe even taking notes when they give you the answers so it will be easier to recall. Please keep us up to date with how it's all going if you're comfortable to do so
Sorry I haven't been able to keep you guys updated as to whats going on with me lately, I haven't had any internet.
Went to Melbourne for my second visit last week and got told that the baby is still too small, about 2 weeks behind. Got told to have an amnio by the U/S chick, we said no and she proceeded to yell at us and tell us that we don't know what we're doing.
She told me to my face that I "don't understand whats going on, your baby may have a chromosonal abnormality and it will die. It will be taken out by C-section and you'll have a scar on your uterus forever for no reason and you don't understand what that means".
She continued to yell at DP and I (who were shocked and couldn't say anything!) that it doesn't matter if he and I don't want the amnio because "WE WANT TO KNOW WHATS GOING ON!!" (meaning them). I tried to fight back but was told to leave.
I was in tears when we got out of there. I still don't think my baby is going to die.
Next step was going around to see my new OB (who we have trouble understanding because of his accent), and got told that we should have an amnio, we said no and left.
No answers. No nothing.
So, DP and I talked about it and we decided to go see my old OB, without Melbourne knowing.
We showed him the ultrasound results and he was able to tell us so much about whats going on. We weren't told that bub's has a small, lemon shaped head which means there may be a problem. He too suggested an amnio and after talking with him about the whole situation a bit more DP and I have decided to go for one, on one condition.
That my old OB does it. We don't trust the people in Melbourne, the word amnio strikes fear into us when the talk about it. But with my old OB it seemed like the right thing to do. The amnio will give us a very clear picture of whats going on and right now that seems like what we need.
New OB says he loses about 1 in 200 babies when he does an amnio.
Old OB says he has been doing them for 15 years and never lost a baby.
Hugs what horrible treatment you have received, so sorry to hear that. I can't believe that medical professionals that are specialised in high risk care could be so heartless and rude.
I'm so sorry you have been treated in such an awful way this is a stressful enough situation without all of that on top of it.
I'm glad your original Ob is more supportive and keeping you well informed, making these hard decisions easier. Are you able to continue seeing him? Or have him communicate with the Melbourne Ob on your behalf?
I'd love to keep seeing my old OB, but I guess the only thing I can do is go to Melbourne, get the results of each scan and go and see my old OB.
DP rang my old OB yesterday(the building where he is, anyway) and asked if he would be available for an amnio, but unfortunatley he wasn't in that day for some reason so the sister was going to talk to him and get back to us today. Well, I got a phone call yesterday afternoon from the building saying that the matter had been discussed with another OB (who I've never met or had anything to do with him!) and he's decided it's not possible. Basically, if Melbourne want me to have an amnio, then they have to do it.
I didn't think fast enough while the nurse was on the phone, because I was gutted that I couldn't have the amnio. But, I should have gotten mad... I was so mad when I got off the phone. The matter was supposed to be discussed with MY OB!! Not someone else who doesn't know whats going on!!
I've got an appointment with Melbourne on Tuesday, I guess I'll talk to them then and tell them the conditions on the amnio and they can sort it out from there.
My spirits are so high after coming back from Melbourne yesterday!! Mostly because we dealt with people we hadn't met before and didn't see anyone we did know!
And we didn't hear the word amnio or chromosonal abnormality!
First was the ultrasound which was given to us by a really lovely girl who talked non-stop! That was awesome! She told us that bub's head looks funny and we said that we've been told that. She said that its most likely normal, but just looks deformed because bub was in breech and has been for every scan we've had.
Her and her superviser aren't worried about bub's size (exactly 3 weeks behind), because he's still growing at basically the right rate, just small. He's perfectly healthy on the inside, but some of the exposed bowel may be beginning to dialate (or stress). But they can't really tell at this point, so they're not worried.
Although, they did say that his growth is slowing just a tiny bit, nothing to be concerned about yet, and so they did a check of my blood flow to bubs. And my left side is giving up a bit, so my placenta is aging a bit faster than they'd like.
The plan from here is go to Melbourne every second week, and see my local OB every week in between, and be scanned ever week to keep an eye on my blood flow.
They're also watching me closely for high blood pressure and pre eclampsia.
I've started having steroids, which hurt like hell!! Gotta have another injection today! I was told that that will help bub's lungs and brain develop faster. And, of course, I'd go through anything to make sure he has the best chance.
And I've been told that they're going to try and keep me pregnant for another month and then deliver soon after that.. In 4 weeks I'll be about 32 weeks, which gives bub a really good chance of surviving the operation and having minimal problems afterwood.
Met with a pediatrician, who explained everything again and was extremely helpful.
He says that I most likely won't need a C/S. There's no difference in how the bowel will cope. I guess that'll only come into play if bub doesn't turn around.
Getting a tour of the Royal Childrens in 2 weeks, hopefully.
And also been told that we can stay in Ronald McDonald house in the hospital.
So good!! I'm so happy!!
Thanks again for all your support. You guys have helped me so much.
I read your update #2 and am so glad for you to be reading this one and hearing that you have had a more positive experience with the medical profession this time.
Good luck with everything over the next few weeks.
so glad to hear you being so positive Charlotte. I have merged your three threads together so they are easier for people to find as I know a lot of people are following your updates
Had a scary night last night!! Started getting some pretty bad stomach pains. Went to see the local midwife (whose consulting area is her lounge room! Just gotta watch out for the kids toys!) and she checked me out. My stomach was tightening and was really quite sore. She's dealt with alot of Gastroschisis babies before and said that the safest thing for me to do was go to the Hospital, which is an hour away (and then most likely go onto Melbourne). Unfortunatly my old OB is overseas, so I had to see a replacement.
They hooked me up to a monitor, bub is doing really well. Gave me some drugs to stop anything happening, gave me a pap smear to see if anything was going to happen (my first ever!! Not a pleasent experience!!). Luckily, all the pains stopped, and labour seems like its a while off yet. They kept me overnight for observation, and tried to do a trace this morning without any success. Bub was just too hyper!
I have to take some pills for the next week to relax my womb, making labour unlikely. I'm glad! I was so worried that bub was coming.
I'll make sure I try to keep you guys updated. I think I'm ready now.... Not really sure how to fully prepare myself for it, but I've done lots of deep breathing and "everythings gonna be OK"-ing. lolz
I rang the Womens a while ago and asked if I'd been booked in yet, and they saw that I needed a C/S but no time had been booked yet so I have to ring back in the morning. Mildly frustrating.
It was good talking to the paed surgeons, but it was kinda everything we knew.
It's nearly 100% likely that they're going to use a silo to ease the gut back in over 4-5 days. Because bubby is so small it will put too much stress on him/her to put it all back in at once, also they're going to take over all of bubs breathing by using a ventilator. Not sure for how long, tho.
I'm getting pretty excited, I have to admit. Its finally going to be moving onto the next chapter. I'm so sick of the "complicated pregnancy" chapter. I'm so ready to start the "getting bubby better" chapter of our lives.
And for some reason over the last month its been killing me that I don't know if its a boy or girl. I call it "him" all the time, but I been having dreams that its a girl.
Its driving me mad!! But, I'm not going to find out now via ultrasound.
Anyway, will let you know when the C/S is and how the growth scan on Tuesday goes.
Then, hopefully next weekend, I'll be able to find the internet and let you know how bub is going after being born.
I have been following your thread for a while but didnt want to post anything.
I had a daughter in July with Gastroschisis but i had her over in perth. I was induced at 35+5 because of non reactive CTG and a non reactive ultrasound and her belly had stopped growing at 30 weeks, and had a successful vaginal birth, turns out she was just sleeping and become reactive again a couple of hours later. Birth was uncomplicated and she was perfect the day she come out weighing 5 pound 3 ounces. Surgeon was little to my knowledge a fairly new surgeon to PMH and decided to put her belly straight back in. The next day she pretty much rejected it and her sats and bp and heartrate shot up.. they did emergency surgery to remove her bowel into a silo. a few days later they noticed part of her bowel had died to they released it loosley into a saline bag over the next week and a bit to try and save some of the bowel. when she was 10 days old they operated on her to remove the dead bowel and ended up taking 50cm which would have ment she could have lived a normal life. They put it back in a silo and carefully reduced it over about 8 days. The day before her final closure operation she was diagnosed with RSV bronchitis-(a viral infection like a cold) and surgery was put off. She started to get really bad with her breathing so she was back on a ventilator. anyways cut a long story short she passed away at 7 weeks old due to over ventilation had punctured her lungs one to many times.
Anyway My advice to you is to keep that baby in as long as possible. Ella was nearly 36 weeks but she would have lived if she wasnt that slightest bit premeture. It is good to hear that they will be doing silo.. it is the best way. You are in good hands in melbourne. If Ella was breast fed she would have been able to build up the immunity to fight the RSV and again would have lived. I know of about 4 babys, all who were in and out in between 8 days and 3 weeks.. some do have to stay if they have bowel complications like Ella did.
I wish you and your baby the best.. hang in there!
Thanks for sharing your story Shan, and I'm so sorry that Ella died. I'm sorry but we cannot have links to other forums so I have had to remove your linki to your birth story. We have a section on this forum for Birth Stories and Your Stories of Loss if you would like to share your story here.
Sorry its taken me so long to get on. Unfortunatly Ronald Mac house doesn't have great internet and BB is blocked.
Hannah Marie was born on the 10th of December via C/S at 34 weeks weighing in at 3lb 12oz. Came out kicking and screaming and hasn't looked back since!
She has amazed everyone in the last 10 days. We were told before she was born that there was no way that they'd get the bowel back in and that a silo would need to be used.
They got all her bowel back in and she only has a few stitches in the middle of her belly button. I'm so proud of her.
She was taken off her ventilator on tuesday (14th) morning and then that night she was moved out of intensive care.
We were told that it would be over 2 weeks before she could feed and they actually started feeding her yesterday. It was 1ml every 2 hours and today its 1ml every hour and in a few hours they're going to see if she can handle 2ml an hour.
She hasn't done very many poo's yet, she did 2 at the Women's, but has only done a couple tiny ones since being at the Childrens.
I'm so happy with how my c/s went. I guess I just worried about nothing. It all went really well and I was off all painkillers except panadol from sunday morning.
We even got a hold of Hannah before she was taken away, they wrapped her in a blanket and layed her on my shoulder for about ten minutes. Even took some photos of us 3 and of DP and Hannah.
Got a bit of an issue with my milk. I've been told to express for 10min a side every 3 hours and that "you can never have too much milk!!"
Well, I've got too much milk and they're trying to reduce it! lolz.
I'm giving about 120ml every 3-4 hours and leaking really really badly! My poor boobs! I slept all night and woke up this morning after not expressing for nearly 10 hours and thought they were going to explode!
Hannah has been going well pain-wise. It was horrible to see her "drying out" from the morphine on Monday (13th), she had the shakes all day.
Today they've taken her off regular panadol and only giving it to her when she seems she needs it.
Still no idea as to when we'll get home, but the way she's going it won't be long away.
Aiming for Australia Day.
Thanks again for all your support and I'll try and update when I can.
Gastroschisis Update
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have you started writing down all and any questions that come to mind so you can ask them at the hospital? It will probably be a pretty emotional and bamboozling day, so having Q written down might help. And maybe even taking notes when they give you the answers so it will be easier to recall. Please keep us up to date with how it's all going if you're comfortable to do so 
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