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Support Group for High Risk NT Results #43
122 replies to this topic
Posted 16 May 2013 - 10:42 PM
Hi girls, just a quick one....
Appt & anatomy scan was a huge success - well in my books anyways!! Growth is right on par with EDD hooray!! And sonographer said, quote/unquote, "baby is looking absolutely perfect!"
Saw the professor who supervised my amnio & he was a star, treated me soooo well & even tho my full amnio results still haven't come in (which he said was expected) he is certain nothing further will come of it. I will be phoned if there is - otherwise I'm not needed back at the clinic for 4/5 weeks. I will be watched closely & have been told to keep up aspirin, no harm in it & it may help - so the prof wants me on it. It thins the blood, so if you do have a crap placenta it can help. At the same time, it may do nothing, but there's no harm, so why not?!
Nervousmuma, so happy your scan also went well, don't fret about the extra scan.... I bet it will be fine. although the journey feels never ending!!!
Also I'm pretty sure if your amnio/CVS comes up clear & there are no other issues then you don't need to be treated as high risk...... I have a history of past issues so there's no avoiding the specialist high risk team at KEMH. Seems there are a few of us WA girls.
Hope everyone is coping ok? Keeping busy & staying positive. Thinking of all here. Xx
Posted 17 May 2013 - 08:57 AM
WorriedMum, thats great! I'm so happy for you! You must have been so pleased after that scan.
Lilseads - You are such a strong woman, I have complete respect in your decision and are thinking of you x
Update on me:
I spoke to the Geneticist last night who seemed to confuse me more. Previous to speaking to him I was fairly comfortable where I was, but basically he told me that he can't give me any indication of how this will all pan out. It can vary between a healthy baby to a baby with heart difficulties, and possibly ambiguous genitalia.
My OB said based on my latest scan, he is sure that the baby will be a girl. If thats the case, she will have to have her ovaries removed if they are streak ovaries.
My biggest fear is having a baby who is labeled by everyone as 'having a disability', and the geneticist was wording it was a disability also. In my eyes, I thought it was just a different chromosome make-up.
GC said I now have to decide if it is right for us to continue with this pregnancy, and that I'm young, and the risk of having this happen again is so minimal. But prior to this i've had 4 miscarriages. I feel if I were to terminate, i'd be destroyed with guilt, and wouldn't feel up to trying again. I've had enough of it all!
It's not an ideal question, but i'd really like to know (truthfully) what other ladies would do in this situation now, post back, or PM is you would rather.
I want this baby, I'm scared of terminating, but is it worth putting all my money on hoping the baby's 'Turner xo/xy mosaic' features are minimal?
My last scan showed no abnormality except a SUA which I already knew about
Posted 17 May 2013 - 11:45 AM
**hugs** Alexis.... It's hard to say what we would all do..... However I think as far you would have gathered from my posts with lilseads that for me, I would take the gamble. While my 1st son doesn't have a 'disability'as such, he does have a chronic medical condition. And you know what..... Somethings like autism, which is now becoming extremely common is not picked up before or even a while after birth. So you can do everything to avoid having a "special" child.... Then end up with the choice taken away anyway.
The thing is, if your positive with your child, they will pick up on it & develop a good self esteem. Don't think of it as a disability.... Just another challenge.... One small part of your child, but its not what makes your child, it doesn't define who they are - its just one part of them. My DS1 has diabetes, he isn't diabetes.... Yes we deal with it every day.... But its just a part of our life.... We don't let it rule us or stop us.
And you know what.... Surgery is a common thing.... Even taking hormones will be a relatively small thing & not something you'd need to worry about for a while. If your child has a positive supportive family they also will be positive & have a good quality of life. Also you do have a good chance of a normal child.... And you must think about that and whether you would be ok letting go of a child that was perfectly normal because of unknown factors. It's likely the GC doesnt have a "special" child & its worthwhile speaking to different parents who have different children with different needs.
Xxxx I'd have bub..... But that's me Xxxx
Posted 17 May 2013 - 02:55 PM
That's fabulous news WorriedMum!
Alexis, I honestly have no idea what I would do. I am struggling with what I will do if this child does have downs. I always thought it wouldn't make a difference, however I am a sole parent and have another child to consider. Whatever I decide to do though, this will be my last pregnancy as I am not going through hyperemesis again, so far I have been robbed of 13 weeks of my life and now I have this hanging over my head, plus I had to come off one of medications for depression/anxiety which is not helping matters.
Only you know what you can and cannot cope with. Sorry I am really not much help at all, my mind is all over the place at the moment. I have gone from not being too stressed about it, to it consuming me.
Posted 18 May 2013 - 09:06 AM
Thanks girls, I really needed opinions, I felt as if I was not thinking straight.
WorriedMum, I feel that our views are quite similar, and your advice was amazing. I needed to hear it from someone outside my family.
I spent the whole of yesterday balling my eyes out with over a months worth of fears, frustration, and stress, but woke up peacefully calm.
I've decided to keep my baby, it has beaten too many odds already to give up on.
I'll back off on this thread though, and only update if something happens, more to document my situation in case anyone else has the same results as me one day.
I'll pop in every now and again and contribute if I can, as I want to know how you all go.
love to you all! xoxo
Posted 18 May 2013 - 10:44 AM
Hope everyone is well.
Lilseads -im very sorry the results didn't confirm it was only confined to the placenta. Good luck with whatever decision you make. Will be thinking of you.
Andr3a - good luck on the blood test wait, hope it flies for you...the waiting is the worst part.
Cookie- Great news on full amnio coming clear
Nervousmama/worried mum - great news re clear scans thats fanatastic, bet your feeling more relieved
Alexis - Congrats on your little girl. hmmm such a tough one making a call on someone else but I feel your decision to keep the bub is probably the right decision....I'm having two fetal echocardiograms (15w, 20w) due to high NT as well as detailed scan, and I'm sure you will be as well in which these will help you rule out any major issues such as major congenital heart defects. Not sure if they do them automatically for you but if not request them, that will at least give you some comfort that nothing serious wrong ie heart is identified. The scans will also rule out many structural abnormalities ie renal system, structural hernias etc...which is the same in my instance. Like worried mum said whether it is surgery or growth hormones these are minor things in the scheme of things. Good luck with everything..i'll be thinking of you.
Good luck to the rest who are waiting...waiting on tests, results. xx
My fetal echo is on monday so im praying everything will be ok...sometimes i feel like i had the worst odds 1:2 which came back great...and maybe its too good to be true. Anyway cant wait for this scan and the 20w to be over so I just 'know'.
Posted 18 May 2013 - 02:03 PM
The doctor performing my cvs all but confirmed that my baby had chromosonal abnormalities. Just waiting on the results which hopefully will confirm exactly what. We have already made the decision to terminate.
Posted 19 May 2013 - 01:08 AM
Alexis... Good luck for the rest of your pregnancy.... You know that you always make the right decision for you. I can understand backing off from this thread, I should do the same... But I want to report in when I do get the final ok.... But basically if I'm not phoned this week then im in the clear.... I also like being able to support others... It's a very difficult place to be in. I look forward to your updates or update at the end when bub is born. follow your heart because your head can get around it. Xx
Subbie, good luck for Monday, fingers crossed all goes well & I'm sure it will. Heart defects are the most common of all birth defects & if it does come to worst then at least your in the know & if so hoping it would be very minor. But don't even think that..... Just think positive & enjoy seeing that lil heart flickering away & seeing bub move & wave on screen.
Star, ***hugs**** I'm so so sorry & sad to hear your news. I would be doing the same thing, don't feel guilty. Make sure you get plenty of rest & you time & pamper yourself. Fly free precious angel. Xxx thinking of you this coming week.
Posted 19 May 2013 - 11:08 AM
Thx worried mum.
Mum to a star I'm so sorry to hear of your news.... I'm hopeless with words but am thinking of you! Hope you get information as soon as possible not to prolong your wait. Big hugs x
Posted 19 May 2013 - 11:23 AM
Everyone is so lovely, im overwhelmed.
I wish all of you going through this sh*t time all the best luck in the world for good outcomes and if not, the strength to go on.
Posted 20 May 2013 - 08:48 AM
I should have the results after 4pm today. Does anyone know, if medical termination is required, what happens next? I hope I'm not offending anyone, just doing what's best or us.
Posted 20 May 2013 - 12:28 PM
(Former poster delurking)
Mum2astar - I am so sorry you are facing this. I have been through this situation too, in May last year. It depends on how far along you are and which state you are in. If you want any information about my experience, please feel free to PM me. There is a termination board in the pregnancy loss forum too. Sending you strength to get through this next period.
Posted 20 May 2013 - 12:46 PM
For Mum2AStar - http://www.essentialbaby.com.au/forums/ind...;hl=termination
Posted 20 May 2013 - 12:47 PM
It has been confirmed, my baby has triploidy. An extremely rare condition where each cell has three chromosomes instead of two.. Not compatible with life. Just waiting to speak to my doctors for the next step.
Posted 20 May 2013 - 03:40 PM
**hugs**, sorry the bad news was confirmed. Will be thinking of you this week. I wish no parent had to endure this kind of pain.
Posted 20 May 2013 - 04:32 PM
Sorry to read that mum2astar, sending you loads of support.
Posted 21 May 2013 - 11:35 AM
I just thought I would update you all on where I finished up. On the 17th May 2013 at 20:04 I gave birth to my son, Chance who weighed just 50grams. I kept him with me and my husband overnight and in the morning I said goodbye and he is now being cremated and will be back with us soon. I got the most beautiful pair of footprints and I am getting a tattoo on Thursday in his memory. Although we made the decision that was right for our whole family the loss of him from our lives has left a massive hole in our hearts. It has been without doubt the hardest thing I have every had to do. When we sat down and told the other kids we all shed many tears. They understand as best they can and I can tell they are trying very hard to be good for Mummy while I am feeling so lost. I have had overwhelming support from my family and friends but nothing takes away the emptiness I feel. I know our decision was right for us all but that doesn't make it any easier.
Thank you for all of your good wishes. I wish you all the best of luck on your emotional journeys!!!
Mum2astar I am very familiar with what you face. If you need to please feel free to pm me and I will try to help out if I can.
Alexis, I am so happy that you have come to a decision. I wish you the very best of luck with it all and I hope the effects of the chromosomes are minimal. I will pop back from time to time to check on your progress. I truly hope it works out well for you xxx
Posted 21 May 2013 - 04:04 PM
*hugs* lilseads, I don't know what to say as I'm sure your grief is untouchable at this time. :'( my heart breaks for you & your family. I think the tattoo is a wonderful idea.
I wish you well for the future & I'm sure there will be an opportunity to continue your journey with a healthy baby in the future. Take time to heal , as much as you need.
Posted 21 May 2013 - 05:54 PM
Many hugs lilseads. It's just the pits isn't it. Stay strong, do what you need to do to get through. My thoughts are with you.
Posted 22 May 2013 - 02:06 PM
Hi all, can I join you?
Firstly, I have had a quick read through some of your posts, and I am terribly sorry for what some of you have been through.
I am 13 weeks pregnant with identical twins and was given a risk profile of 1 in 36, based mainly, I think, on thick nuchal folds and my age (38). I have a CVS yesterday and am waiting anxiously for the results. We opted for the FISH test.
Good luck to everyone who is unfortunate enough to part of this group.
Posted 22 May 2013 - 06:42 PM
Hi Miss A,
Sorry to find yourself here. just letting you know you have a very high chance of things being 100% fine. Your lucky your waiting time is relatively short, since you were able to get the CVS quickly. Waiting is the worst part honest to god!!
Do you know what the NT measurement was for both bubbas?
AFM, Didn't get a phone call yet from the hospital with my final amnio results, so I expect I won't...... Was only going to be called with final results if something was amiss. It's been over 3.5 weeks, so results would have been finalized. FISH were completely normal.... So I'm ok without getting further news til the next ob appt.
Just a re-cap on my story, before I make myself more scarce in this thread, I shall pop in now & again to offer support & let everyone knows what happens with my extremely low papp a.
Risk factor: 1 in 74 for T21
NT measurement: 1.4mm
Nasal bone sighted & no other soft markers seen
HCG: 1.8 & PAPP A .19 MoM
It was a horrible 3 week wait for my amnio, but the next day my fish results came in with the all clear! thank God!
Just want to give hope to others with similar results. I'll have extra scans & I'm taking aspirin due to possible placenta issues - especially likely in the 3rd trimester.
Good luck to all who are traveling this hard road. Remain positive... You will get through it. Xx
Posted 22 May 2013 - 08:53 PM
Thanks for updating us.
May Chance fly free. Sending you the strength to get through these times.
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