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.
Charlotte, I'm so sorry you are going through this. Firstly to have the worry over the health of your beautiful baby and then to be dealing with such rude and insensitive people! Thinking of you.
Genetic counsellor can also help get information for you or get drs to explain thing properly. They can also give you info on amnio's etc. One of the main principles of genetic counselling is the right to personal autonomy (the right to make decisions for yourself) and being given appropriate information in a format you can understand to make the decsions is really important.
They may also be able to link you up with families who have also had bubs with similar conditions who might be able to give you tips on the surgery etc.
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.
BellyBelly Member
Gastroschisis Update
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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