More potential problems with bub... need help.

Hey, everyone.

Went to Melbourne on Tuesday for the first meeting with the Royal Womens to get bubs Gastroschisis diagnosed. On that side of things, it went awesomely. There's aparently only 5-6mm of bowel sticking out which is classified at 'very tiny'. So, we're happy about that!

But, (this might be a bit of a rant!) it was also discovered that I have Oligohydramnios. Which means that my amniotic fluid is low. Unfortunately they won't tell me how low. Everytime I asked a question I got told "I don't have those numbers" "I don't know" or "I cannot tell you". DP and I were getting extremely upset with this. The doctor at the U/S told me that I needed to have an amnio right now. I said no, because I felt that I didn't need one and I wanted more information on my baby, because all I was being told was to have an amnio and nothing else. Their reason for me needing an amnio was because of the Gastroschisis, Oligohydramnios, bub's small size, I have a tiny baby bump (which runs in my family, most of the women get no stomach at all, and if they do its not til around 35 weeks), and the fact that I'm 18.
Bub's small, they won't say how small but he's on the lower end of the scale. DP and are fine about that, also a family trait that baby's are small until later on in the pregnancy.

I was then sent round to Maternal Foetal Unit to see a OB, who unforuntaly as I said was very unhelpful. All he was concerned about was forcing me into having an amnio because of the "high risk" of chromosonal abnomalities, and they want to do an amnio for their own information. Again, he wouldn't tell me how high the risk of chromosonal abnormalities and after alot of fighting and guessing numbers from me he told me that the risk is just under 5%. So, I've got a 95% percent chance of a baby being completely normal and healthy. Another thing he was stuck on telling me what that the baby could die, but wouldn't tell me how high that chance is. There's that risk in any complicated pregnancy that the baby could die. My mother lost one at 21 weeks, clot in the umbilical cord. My sister lost her first one last year at 20 weeks, hypercoiling and thinning of the umbilical cord.
And they kept telling me that we have the option of termination. I couldn't kill my baby for no reason. It goes against everything I believe.

All I have to go on concerning the health of my baby is my gut feeling. I know in heart and soul that he's going to be ok. I just know it. And it sucks that no-one in the hospital will understand when I say that. My gut has been right on so many occasions.
I have to trust it. Bub is going to be fine.

I just really need some support right now. DP has barely spoke since the hospital. Last night he told me that he's worried that we're going to lose the baby.
We're both OK with the fact that the baby could have chromosonal abnormalities.
DP told me last night that his ex had abormalities and she was completely normal, apart from being mostly deaf.

Any comment are welcome. I need some help.

--Charlotte.

I couldn't read and not post. Just wanted to give you some huge hugs. :hug:
Hopefully someone can post some help for you. I'm sorry I can't.

xox

Thats ok! Any comment and hugs help!

Thanks!

:->

so sorry you are having a tough time, but well done for standing up for yourself. You sounds like a very strong woman, I think this bub picked you to look out for him :hug:

I too am very impressed with you standing up for yourself. It is absolutely your right to not have an amnio, even if the doctors sometimes forget this.

Through the hospital you have access to social workers and the consumer advocate, so if you feel that you are not being listened to or you are not being given all the information you can make an appointment with the consumer advocate or a social worker and ask them to get the information you need. The consumer advocate s ph no is 8345 2290.

take care

Hi Kate,

I don't normally post in here but thought i would have a look as i was looking for something completely different.

Firstly might i say without sounding too patronising that at 18 I had very little clue, and at now 32 i hope if faced with the same situation i would be as level headed and mature as you are in your post.

If as you say you know that this bub is ok, and things will turn out to be fine, follow your instincts - i rely on mine all the time and have come to learn over the years that sometimes its all you have got. so if you believe in what you are feeling so strongly - stick with it i say.

Demand more information, this is your body, and your baby and any decision that needs to be made should be an informed one - with both benefits and risks included. Don't feel forced to make a decision and if things don't turn out the way you thought they might, make decisions as they need to be made with your partner.

Too often as pregnant women and women in general we are forced into making decisions based on "medical opinion" when that opinion turns out to be misinformed and often wrong.

So hang in there, you are going to be ok (fingers crossed) and so will that little bub. :)

cheers
Levi

sorry i called you kate - read the post before mine.......

sorry charlotte.. :)

hugs hun. Well done for sticking up for yourself.

Hi Charlotte
I am another one who would like to congratulate you for standing up for yourself.

I find it very difficult to believe the comment “I don’t have those numbers”. Most if not all medical test results are now available on computer. All they need to do is look you up on their PC. If for some strange reason you are not on the computer than all that is need is a phone call to whoever did the test. My suspicion would be that your fluid levels are not all that low but they still want to do the amnio.
So let’s say that you did have the amnio. If they found a problem what are they going to do? You said that you could not terminate. There is also a small risk of miscarriage.

Trust your gut and do what you believe to be the right thing for your family and baby.

Hi Charlotte, massive :hug: hun. You are a very strong woman and I too believe in your gut instinct. It just doesn't seem right that the doctors are not giving you any answers, not good enough. Being told to terminate your pregnancy without giving you the answers you need is totally wrong. I too with Emmanuel was told to terminate, I know how you are feeling but Emmanuel was diagnosed with Trisomy 13, we did have answers. I feel your heartache and will be praying for you, your family and your baby.

Regards,
Dianne

Big hugs, you are really strong in standing up for yourself. Go with your gut feel - if you feel baby is going to be okay then dont let them bully you into having an amnio if you dont want one. At least they should be giving you a bit more information - I thought they were suppose to disclose everything these days and give the worst case scenario. There is a 1 in 200 miscarriage rate with having an amnio, though I have read it is lower in very experienced hands.

Ask yourself the question though, if the results are not good and you would not terminate and would carry the baby to full term regardless, then there isnt really much point in having an amnio I dont think (unless you really want to know to prepare yourself). Good luck, I hope everything turns out fine.

Thanks everyone for your support, its really helped me.

If for some reason I decided to have an amnio (which I'm not going to, I don't feel right about it) and got told that the baby won't survive or has little chance of survival I would still carry bubs as long as my body allowed.
My nana overseas told me a story where a member of her church was carrying a baby and it was diagnosed with having its brain develop outside her skull. They were told to terminate but it went against everything they believe in. Their little girl only survived a few hours after being born but they said that they wouldn't have given up those few hours for anything.
My auntie has brittle bone disease. When she was pregnant with my cousin she was told to terminate because little katrina had broken her femur in the womb. She was told a few times to terminate. Katrina is now a normal 7 year old. Yes, she's broken a few bones, but she's completely normal.

I've researched Oligohydramnios (low amniotic fluid) and nowhere have I read about having an amnio. One of the only things that can be done to correct this problem is giving mum lots of fluid. So, I've made sure that I'm drinking plenty (I'm usually hopeless at drinking!) and I'll see if that improves anything.

It's just so frustrating!

Thanks again!

--Charlotte.

Even the results of an amnio can't give you a definitive answer of whether your baby will make it earthside, will live a short time or will live to be a 101 years old. An amnio can tell you how many chromosomes your baby has and if they are all in the usual pattern and order. From this, if your bub has variation from the usual, they can give you info on other bubs who have similar variations but every child is individual and will have their own path to follow.

An amnio has a stated risk of 1/100 of losing the pregnancy. A doctor who has experience in performing them often has a much lower incidence. The doctors at the RWH work with 'high risk' pregnancies and especially those in the Maternal Fetal Unit would probably have a lot of experience in performing them. (Just some info in case you want info to consider)

The Ob probably suggested the amnio because of the combination of the low fluid and your bubs tummy issues. Were you able to see a genetic counsellor at the hospital? They can help you work out the best options for you, and also help you find information that you are seeking (if the info is out there).

take care

Good on you for going with your gut. Unless they can give you better answers than that, they shouldn't be pressuring you for an amnio, especially with low amniotic fluid. An amnio could cause this to leak further. Sometimes they try to inject fluid directly into the sac - did they suggest this to you? It doesn't always work.

There are a number of conditions that can cause low amniotic fluid. Our son died from one of them, but it wasn't picked up until birth. I wouldn't take back the time I had with him for anything, but I also wouldn't continue a pregnancy if it happened again. Some things are just too painful. We all have to make the decisions that suit us best. This doesn't mean your bub has anything as bad! btw - an amnio wouldn't have picked up his condition.

Increase your fluids, eat well, take care of yourself and trust your instinct.

Wishing you and bub all the best.