Thursday 12 March 2020

18 Weeks Pregnant: Echocardiogram & First Amniocentisis Results

Amniocentisis Results

It’s Thursday and it has now been 4 days since my Amniocentisis procedure, I haven’t been waiting for them so anxiously like I did the NIPT Harmony results, it almost feels like this will solidify my next step. Confirm that this baby is not going to be with us for the next stage of our journey.... it’s a horrible thought but somewhere between the scan at Worcester at 17 weeks and the Amniocentisis itself... I have accepted and prepared myself for the most likely next step. 

My brother very kindly offered to take me to the echocardiogram scan at Birmingham Women’s Hospital. Luke has been away (You can always count on everything happening when you are on your own) and I just don’t feel comfortable driving to the hospital, especially since it is almost always bad news in some way shape or form. I finished work at 12pm and dropped Leo with my brother, then we hopped in the car and made our way to the city.

Just as I was directing my brother towards the Women’s Hospital, my phone rang and interrupted the sat nav. It was an unknown number and I knew straight away who it was, it was bound to be the hospital with my results. 

The lady Introduced herself and she was indeed from the Women’s Hospital, and she did have the first set of results from my Amniocentisis. She asked me if I wanted them now or at the appointment, part of me wanted to be put out of my misery and just know, but the other half said to wait as my poor brother needed me to direct.
I told her I would wait and find out at my appointment, suddenly I felt nervous. I was going to find out very soon whether baby did have Trisomy 18 - Edwards Syndrome or whether we had cleared this first milestone. 

We sat and waited, the appointment time came and went and I was feeling anxious. Eventually we were called in and the first thing I said was 'I hear my first set of results are in'. The two midwives confirmed that this was the case and one of them left the room to collect the report. Somehow I managed to get the news from the second midwife before the first even entered the room again.

The first set of results told me that baby was clear for Trisomy 13, Trisomy 18 and Trisomy 21.

Our baby did not have Edwards Syndome! 

Our BABY BOY did not have Edwards Syndrome!

After asking about the findings on this result, my next question was of course was I carrying a baby boy or baby girl, since my gender scan at 16 weeks was hardly confirmation.
It felt like a small victory in a battle that was yet to happen let alone be won, but it was a victory all the same. Suddenly the flame of hope burned again and filled the dark room that had been engulfed when that flame of hope had been so viciously extinguished.

I don’t think I can explain how nice it is to have hope in all this, that there could somehow through all the tears and uncertainty be a happy ending. When that hope was completely taken away with a potential prognosis, it really did feel like the fight was over.

Now here we were, another appointment but for the first time in 10 weeks, we knew for sure that our baby didn’t have one of the 3 trisomies. There could still be something uncovered in the full array result, but for now this win needed to be marked.

I lay on the table and the cardio midwives got to work, of course due to the baby's position and the low amniotic fluid, it meant that not a lot could be observed in great detail. 

The scan should have lasted 45 minutes, but baby boy was just not in a position to have his heart looked at in anymore real detail today. He’s measuring smaller and they said the optimum time to look at the fetal heart was around 21 weeks, but with baby being smaller that might be later on with us. 

They confirmed that the 4 chambers of the heart were there, that it was deviated to the left and they could see one outflow, but we left with no more real knowledge on baby boys heart. 

They were surprised that no further appointments had been booked for us, but with Dr Kirby’s thoughts on Trisomy 18, he must have thought it was the end of the road for us too…

The next step in the plan is to wait for the full array to come back, this can take up to 2 weeks. It would show if baby had any other chromosome abnormalities that the Amnio tests for. Even if that came back clear... there could still be something that they don’t test for, and chromsome abnormalities apart the ultrasound markers alone present their own set of challenges.

I brought up Noonans and asked if this would be a possibility to test for if the next Amnio result came back clear, they advised that if the consultant thought we fit the criteria then yes they would test. 
I think the midwives took pitty on me, as when they handed me the report they also gave me 2 scan images. Not that you can see a lot at all... I can see that it's the side profile of baby's head, but I can also see just how low the amniotic fluid is around him.

I did ask if there is anything I can do in order to maybe produce more fluid, but they said there was nothing. I've really upped my water levels and I am hopng that when we go for the next scan on the 19th March (which should be my 20 week scan... but this will be at 19+5).

Once the full array is back they will get us back in, we will need to see the consultants for another echocardiogram to see if they can look at the heart in more detail…

So we’re back in limbo with no real idea what is going on, will we have a baby or won’t we? No one can actually tell me because no one actually knows.
But we do know I’m growing a baby boy.
We do know that we will continue to fight for our baby boy and hope for the best possible outcome.

Right now though I’m trying to make do with the clothes that I have, I see no sense in buying lots of maternity clothes that I may not need. Right now we aren’t buying any baby bits because the unknown is just that, we just don’t know if we get to have our baby at the end of all this.

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