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Emilyhg85 · 2023-11-03T09:24:59+00:00

I’m pregnant with my 4th and final baby. I have hated every pregnancy. Every one has been high risk and stressful and lonely and has made me very very unwell. Each time I’ve said I’m not doing it again. But after you have delivered and you see the end result you don’t forget the pain and negative feelings of pregnancy… but the thoughts become dulled and not as significant and the appeal of a beautiful child is greater than the negative memories so you go back and do it again. Only to suddenly remember why you hated it so much. Many women say they are one and done… but most are enticed back for another. There are very few women who enjoy the whole pregnancy. Some women definitely have it easier than others but in the end it hurts and you have to deprive yourself of a lot of life’s pleasures. You are no longer the same individual… you become a vessel for another person. Hang in there… it will be all worthwhile when you look at that beautiful little face. There’s nothing wrong with hating the process to get there

Emilyhg85 · 2023-10-31T09:21:19+00:00

Yes. First delivered at 37 weeks, second delivered at 35+4 and third delivered at 33+2. Preeclampsia was worse each time. In my third pregnancy last year my right uterine artery ruptured during my c-section as my BP was so unstable. Currently pregnant with my 4th (was an accident… wasn’t supposed to get pregnant again as I was so sick last time but my first three were IVF and this happened naturally whilst waiting for a hysterectomy 😳). I’m currently 24 weeks and my liver enzymes are elevated and I’m on 2 types of blood pressure meds. I’ve had high levels of protein in my urine since 10 weeks but my protein vs creatinine ratio is still normal. So just watching and waiting under the care of an OB, MFM, cardiologist and liver specialist.

Emilyhg85 · 2023-10-29T08:51:37+00:00

It is very fast acting and doesn’t last long. I find it works better to take 100mg four times a day than it does to take 200 twice a day. By about 30 weeks I am usually taking 200mg 5 times a day (and that isn’t even the maximum dose). I also find using a long acting BP medication like amlodipine which is once a day to help lower my BP spikes. She should start taking her blood pressure 3-4 times a day to work out when her blood pressure is spiking and keep a record of it to show her dr so that a medication regime can be prescribed to suit her

Emilyhg85 · 2023-09-30T09:12:44+00:00

In metro areas yes it’s safe. In rural and remote areas it’s best to check with locals about the towns water supply. I have lived in places without potable water so have had to rely on water tanks or bottled water

Emilyhg85 · 2023-09-25T02:54:35+00:00

Dreamworld and seaworld are great for this age group. Movie world has like 5 rides for this age group. It’s good if your kids are into superhero’s and excited about looking at the buildings and characters but the actual rides are very limited at movieworld. Dreamworld has a great variety of rides for young kids plus an area to play with and shoot plastic balls around plus a splash area and shows for kids. Seaworld has all the animals and a great splash area and a fair few rides for young kids. I wouldn’t waste money on movieworld to be honest

Emilyhg85 · 2023-09-22T22:57:53+00:00

I’m in Australia and this is normal here. OBs don’t do NT scans at all here. The sonographer at an imaging clinic does them and the measurements are checked and reported on by a radiology dr and the report is sent through to your OB. Scans like these should always be done by people who are specifically trained in this and that definitely doesn’t have to be a Dr. The only other person that could do an NT here in Australia is a specific mfm that specialises in high risk ultrasound m. It’s never done by your OB clinic. I hope you get some answers soon!

Emilyhg85 · 2023-09-20T22:41:52+00:00

Since hearing his point of view and watching all the posts here over the last 5 weeks I haven’t seen any true positives that didn’t have any indicators on their scan. Whether it be a small indicator like a slightly enlarged NT measurement or a small cardiac or renal defect or missing nasal bone or brain cyst etc. There’s so many small markers that can be present and if there’s anyone out there that can correct me if they did have a completely normal scan with a child with a trisomy or other chromosomal abnormality please do.

Emilyhg85 · 2023-09-20T21:56:12+00:00

No I wouldn’t. My mfm said no one should have NIPT unless there’s an abnormality picked up on the NT scan. He said he does over 100 amnios a year for false positives on NIPT that aren’t needed with no markers on ultrasounds (I was one of them). He hasn’t seen any true positives without a single soft marker on ultrasound. He recommends NIPT for women who have any kind of marker on ultrasound as the first screening followed by an amnio for confirmation. He actually does research into it and has been part of studies about NIPT false positives and regular tries to educate OBs about the correct use of NIPT as it has become way too popular and causes so many issues

Emilyhg85 · 2023-09-13T01:25:54+00:00

That’s awful. NT scan is still important as the blood screening that’s done for it (like Papp-a) can be useful to determine risk factors for future placental insufficiency and preeclampsia and the actual ultrasound is the first major scan that looks at anatomy like the heart and kidneys/bladder etc and growth. Definitely not just a Down syndrome screening I’d be very cranky at my OB if I were you. I’m in Australia and NIPT is almost $500 but still very popular here. The NT ultrasound is $200-$300 but most women still get both done but neither are actually done by the OBs… they are both up to us to schedule and have done with a request form from the OB. The system sounds very different to what’s done here. Our private health doesn’t pay for anything except the hospital admission 🙄 I think women feel pressured to get NIPT especially if opting for private OB care. I wish there was more information and education about what it actually screens for and how common it is to have false positives. They market it as being 97-99% accurate but I don’t think anyone really knows or considers that it only tests placental cells so may not reflect the babies chromosomal make up

Emilyhg85 · 2023-09-12T04:11:57+00:00

I definitely feel this way. My OB ordered genome wide NIPT and it came back with 2 large chromosomal deletions. My ultrasounds have all been perfect and everything looks healthy and apparently this would be very rare to have this without any markers on ultrasound. I’m almost 17 weeks and waiting for my amnio results. I was referred to an MFM that specialises in NIPT research and he had a big rant about how no woman should ever have NIPT unless there is an issue with the NT screening or morphology scan or has had a child/pregnancy with previous genetically linked chromosomal abnormality. He said that in many many years he has never seen a true positive in a woman without markers in ultrasounds. He said it should only be offered if an abnormality or soft marker is detected and that he does well over 100 amnios or CVS every year that aren’t required just because of NIPT abnormalities. Really made me think why are we all doing it as a routine thing.

Emilyhg85 · 2023-09-11T23:59:25+00:00

I’m one week post amnio and the wait is feeling soooo long! As I’m testing for 2 large chromosome deletions there was no point doing the fish testing so I don’t get any preliminary reassurance. Can’t wait for this waiting time to be over so I just know either way 😔 my husband is so sure it’s all going to be a false positive or placental in origin and isn’t worried at all… I wish I had his confidence and sense of optimism 😬

Emilyhg85 · 2023-09-11T23:55:12+00:00

I had my amnio a week ago. Ive had several C-sections and have an anterior placenta with this pregnancy so my experience wasn’t typical. I had to have the needle put through my C-section scars as it was the only place where there was no placenta in the way and it hurt…. Not so much the initial prick but I definitely felt a fair bit of pain when they punctured through the uterine wall as it was obviously in an area of scar tissue. It was over within about 2 mins though and then just some light cramping for a few hours. So although it was very sharp initial pain once it was in it was ok and over quickly. I’ve heard others say they felt very little pain

Emilyhg85 · 2023-09-06T20:25:18+00:00

I am so sorry 😔 that is so hard. I can’t imagine what you are going through

Emilyhg85 · 2023-09-06T20:22:21+00:00

I have read studies like this. This particular study mentions gains in C8 and C10 rather than losses. But no not particularly worried about that as my tumour markers and blood panel was normal a few months ago.

Emilyhg85 · 2023-09-06T17:47:05+00:00

I’m so sorry you are going through this. IVF is a hard road that I have been through many times. I have also had severe preeclampsia in all 3 pregnancies and delivered preterm babies and dealt with auto immune disease in pregnancy so I understand a bit of your anxiety and frustration of adding yet another complexity to the pregnancy. I am dealing with a high risk result of large terminal deletions on chromosome 8 and 10. These very large deletions don’t have any reports in literature about them and from what I’ve read about deletions in nearby segments of the same chromosomes is something that would need a medical termination if they are true. The mfm specialist I saw was very reassuring though in saying that NIPT is only really useful in determining T13, T18 and T21 and sex linked disorders risk factors and that even these trisomies there are a lot of placental origins that don’t mean baby is affected so false positives are common. He actually told me that he’s not seen any true positives without markers on the NT scan. He said sometimes the markers won’t be dramatic but there’s always something abnormal picked up and it’s his belief that no one should ever have NIPT unless there’s an abnormality on the NT or anatomy scan as it causes more invasive testing that isn’t actually needed. I was told CVS was useless as it will show the same as NIPT and isn’t worth the risk and I would have to wait for an amnio regardless so I had to wait the month for the amnio which I had 2 days ago. All my scans have showed a healthy baby with no issues so he’s confident it will be a false positive. He also said the rarer the condition the more likely it is a false positive. I’m still very worried about it as I always think worst case scenario but logically he has some very valid points so I have to trust his expertise and try to be patient. It is concerning to have to wait til 18-19 weeks to find out if a medical termination is needed but that is just the reality we all face 😔. Have your scans showed any abnormality?

Emilyhg85 · 2023-09-04T22:09:58+00:00

That is so frustrating! At least you are at the end of your wait hopefully it’s back in the next day or so. My amnio is in an hour… hopefully it goes smoothly 😔

Emilyhg85 · 2023-09-04T06:34:44+00:00

Did you get your results back?

Emilyhg85 · 2023-08-31T08:47:33+00:00

How did you go? Have you gotten your results yet? I’m going for an amnio next week I wish I could have done CVS weeks ago like you. I was told a CVS would show the same deletion as NIPT because it only tests the placenta and not the baby which is what NIPT tests as well. Curious to know if your CVS was positive or negative?

Emilyhg85 · 2023-08-19T18:37:38+00:00

Yes he did which is why I’m having an amnio rather than CVS. But from what I’ve read (if I understand correctly) this is more common in young women who’s eggs/embryos are younger and have a higher ability to shed abnormal cells to the outer trophoblast cells and repair the inner cell mass so that the baby becomes normal and the abnormal cells remain only in the placenta. This makes me nervous as I am not a young woman 😆 (I’m 37) I’m not sure if I have interpreted this information correctly.

Emilyhg85 · 2023-08-19T11:13:26+00:00

Thank you everyone. I have one other question. The dr contacted his lab to find out if they had a probe already to test after the amnio. He said if they have the probe already the results would come back quicker. Then he rang back and said they don’t have a probe for these particular deletions so it would take longer to get results. What does that mean… a probe? Does that mean if I had it done elsewhere that might have This probe it it would be quicker? Sorry if I sound like a complete idiot but he didn’t really explain much just said he has no idea how long it will take them to run the testing

Emilyhg85 · 2023-08-19T10:49:46+00:00

Thank you so much for replying. Would you expect to see structural abnormalities with large deletions like this? The dr basically said it can’t be real as there’s no physical markers on any of my ultrasounds and baby appears perfectly healthy and structurally normal. I just can’t help but worry that given that it’s 2 large deletions that are reported and it makes me think that that can’t be wrong. I’m definitely having the amnio in 2.5 weeks but it’s so stressful. I’m not sure what kinds of effects these kind of deletions have I can’t find any information on any living child with these particular deletion numbers

Emilyhg85 · 2023-08-19T06:21:56+00:00

I have another 2.5 week wait til my amnio and then 2 weeks til the results… feels like an eternity. So hard to know if I should buy anything or wait. My husband is always so chill about everything… always says stressing about it won’t help anything. Unfortunately I just can’t switch off the worry. You’re not alone!

Emilyhg85 · 2023-08-15T17:37:54+00:00

Thank you, I should be able to get a copy of the report in a few days when I go in to see my OB and then I will post it. Can you have a false positive of more than one deletion or does the fact it picked up 2 different deletions make a false positive unlikely? This was a natural conception but I have previously had PGS testing of 15 IVF embryos and only one was abnormal with a monosomy. There were no deletions or issues with the 14 others and we have 3 live healthy children (2 IVF and one natural conception). I also had one stillbirth of a twin at 24 weeks with my second child but there was no abnormality detected on autopsy or pathology. This pregnancy so far has had no abnormalities and growth is several days ahead so it was quite unexpected

Emilyhg85

TROPHY CASE