Tuesday, 24 March 2020

20 Weeks Pregnant - The Final Fetal Medicine Appointment

20 weeks pregnant - Tetrology of Fallot

On Sunday I reached 20 weeks pregnant, this was my ultimate milestone after the high Nuchal Translucancy test 10 whole weeks ago. A period of time I didn’t know if I would ever make after being told I was at higher risk of miscarriage following the high Nuchal fold. 

The time has passed so very slowly,  it feels like a lifetime ago since we first received the news that there may be something wrong with our baby. It has been a weight around my neck that has only grown tighter with the passage of time. 

Somehow we have weathered each and every appointment, each one bringing a fresh blow to the heart. 

Today with the world in a Covid 19 lockdown, we made our way back to Birmingham Women’s Hospital to see the team at fetal medicine. 

Today we were having a detailed echocardiogram to look at baby boys heart. Weirdly since I found out about the low amniotic fluid (Oligohydromnios), I’ve put the heart to the bottom of my list of worries.

Today it felt different to all of those other visits, it felt like today we might actually have some light shone on what was going on within my tiny little baby. 

Leo and I were dropped outside the front of the hospital as I was bursting for a pee (and had been since 5 minutes into the journey for that matter). I stood with Leo in the midst of a ghost town of the former busy hospital I had known before all of this. 

People walked around in masks, the cafe was open but baracaded off to only let 2 people in at a time so that they could practice safe social distancing. It was like being stood in the middle of a sci-fi movie. 

We made our way straight to Fetal Medicine so we didn’t have to hang around anywhere else too long, we were about 40 minutes early and we walked in to an almost empty waiting area with no receptionist to speak to.

We sat there for 5 minutes before the reception lady appeared, as soon as she saw Leo she started asking whether we had ‘received the message about children’, I think my blank expression answered that one, of course I hadn’t because nothing had been sent to me. It transpired that children were currently not allowed anywhere in the hospital. 

This meant that Leo had to leave the hospital, which left me alone to face the music, the two people I had come with had to leave, so I had to go into the unknown alone. I prayed the receptionist didn’t talk to me again as I sat there, I was angry and anxious and knew that I would just cry agitated tears at her.

My name was called and I was lead to the same room that my previous echocardiogram scan had been conducted in. The consultant asked if I had anyone with me... I had done, but now no I did not. 

The scan was carried out in silence, I think this may have been the longest ultrasound I have ever been in. The entire time he was looking at baby boy’s heart, I could see the red and blue flowing around, the oxygenated blood and the oxygen poor blood. To me it looked fine, it looked like it was flowing. I glanced at the man scanning me, but he gave nothing away.

When he did direct away from the heart, I saw baby boy and the small amount of amniotic fluid that was still left. He asked me whether I had lost any fluid, to which I honestly answered no. 

He pushed so hard with the Doppler, I had been having shooty pains low down on my left side on and off all day, and when he pushed down as firmly as he did, my tummy felt crampy. Eventually he said that to save tormenting me he would sit me in the adjacent room, I assumed this was when he would draw up my notes and then come back in to talk to me about what he had seen....

I sat there for over 20 minutes, people were walking past but no one materialised for me. Eventually a new face poked around the door, she told me that I was having another scan. I lay back down on the table and she began to do her own investigation. 

This second face was actually the fetal cardiologist consultant, she knew her stuff. This scan didn’t last as long as the inital one, the original consultant had re-entered the room now and they were passing comments back and forth, although it might as well have been in a foreign language. 

Finally Dr Johnston came into the room, I saw her at what I believe was my second fetal medicine appointment. Now they had finished looking at the heart, they needed to look baby over head to toe in order to give me a diagnosis and potential prognosis.

I had been in the hospital well over an hour now, well aware that it must have been so tedious for my boys waiting for me to finish. 

The final scan concluded and I was shown back to the room I had been occupying. I was told that they were going to draw the report up now and then they would come and discuss everything with me.

Eventually Dr Johnston, the cardiologist and another face entered the room. The third person had materialised when they had shouted ‘were ready for you now’, I wasn’t sure what her role in all this would be right away, but it soon became transparent.

What they were about to tell me, they had been worrying about telling me, mainly because I was alone. This third face was here to be my shoulder to cry on should I need it.

Dr Johnston started by asking me what I understood so far. ‘I’m aware that there were a number of structural differences found in the baby, including the heart and low amniotic fluid. I am not expecting you to have good news for me’.

I think this cast some relief over them, judging by their sorrowful looks. I wasn’t sure who to look at, so I just tried to focus on whoever was speaking.

Dr Johnston continued ‘the baby is significantly smaller than he should be at this stage and there is very little fluid around the baby. Starting from the top, babies head is long and narrow which is nothing to worry about, it’s just a symptom of their being less fluid. The brain itself looks ok, I know there were concerns about the cerebellum but that actually looks alright. It’s small in keeping with the rest of the baby’.

I can’t see the face clearly, I can see there’s Two eyes, I can see there’s a nose. I can’t see the lip as clearly as I would like to so I can’t really comment on that. The spine looks ok, the arms have the right number of bones and that’s important because there are other syndromes that can be associated with one of the bones missing in the forearm. All the long bones are present.

I can see fingers, I can’t see feet clearly, but that’s not that they aren’t there, it’s just due to the lack of fluid. I can see the belly button and there are 2 vessels in the cord instead of 3, on its own that doesn’t really mean anything but can go with kidney problems.

Putting everything together the main thing that I am worried about here is that when there is no fluid around the baby at this stage, the lungs don’t develop. I think the risk of what we call lethal pulmonary (lungs) hypoplasia (small) where the lungs have grown too small, or the lungs aren’t big enough, the baby can’t get the oxygen out of the air that he breathes, there are no ventilators or drugs that will change that. If the lungs are really small then we call that lethal because they just don’t survive after birth.... and I think your baby falls in that category.

I’m very worried that it doesn’t matter what we do or how far you get in the pregnancy, that after birth the baby isn’t going to survive because of the chest. I think that is a real concern.

Now...we are seeing differences in the heart as well’ 

This is where the cardiologist starts talking to me.

‘I have labelled the heart as something called Tetrology of Fallot which is when there is a hole in the heart’ 

I asked for confirmation that there was a hole and she said ‘yes there is a big hole’. ‘The blood vessels are shifted over so they come more from the right side of the heart. Usually you have Two blood vessels come off, the body blood vessel and one that goes to our lungs. The one that goes to the lungs in narrow, it’s not completely closed but it’s really narrowed and the lung arteries are really small, it’s what we call congenital heart disease. 

If it was that on its own, there are things that we can do. It involves heart surgery but when it’s everything else as well, the problem is babies need really, really good lungs for their heart surgery to go really well. When you add in lungs that are not good, a heart that’s not good and then problems with kidneys as well... it doesn’t go very well. 

I was taking the news very well until they asked me if I had thought about what I wanted to do, it’s all I have really been thinking about. How do you decide to terminate a baby that you whole heartedly want to bring into the world? A baby that was supposed to be your rainbow baby?A baby that was supposed to make Leo a big brother? A baby that you want to bring home and show the big wide world to?

I declined a termination, I said no to stopping my baby boys heartbeat without so much of a second thought. 

I was told a termination at this stage most probably won’t change the outlook for our little man, that he may continue to survive inside because my body is doing all of the work for him, even with the low amniotic fluid. 

The conversation quickly progressed from hearts, kidneys and no baby to bring home, to how I wanted to proceed with labour and birth. I’ve said all along that whatever happens I want to labour. This is the very least I can do for my baby, and whenever this happens, I will rise to the occasion and do what needs to be done.  

I was told to decline fetal monitoring as it is more than likely that the baby is going to get distressed, as the cord will get squashed due to the lack of fluid which could then lead to an emergency c-section. A C section would be a big surgery to go through and would impact any future pregnancies... and on top of recovering from surgery to then not bring my baby boy home.

Then it progressed onto ‘after the baby is born’ this is where I was told to only consider a care package, and this is where I have to disagree. 

If I can get my baby to a viable gestation, no one can really say how his lungs are going to be, or how he really will be over all. 

Scans are wonderful things that allow an insight into a baby’s growth and development while in utero.... but they can get things wrong, they don’t always pick everything up (especially with low fluid). I had been told by more than one consultant in this pregnancy that babies cerebellum was abnormal, and now it’s not. Now I’m told that it’s normal. 

I was told that my baby most likely had Edwards Syndrome, that he had scoliosis of the lower spine, and then he passed the Amniocentisis and his spine looks fine. 

This is exactly why I’ve made my decision. 

I cannot and will not end my babies life. 

I will take each day as it comes, I have to choose between Two horrendous choices. I can choose to end my babies life now, or I can carry on and birth him, and lose him anyway.

Either way I have to labour. 

Or.. I can carry on letting nature decide. I can ask for intervention if we get to a viable stage. I can ask for steroids for the babies lungs, I can ask for saline solution during labour to help stop baby becoming distressed, and I can opt for intervention after he is born. 

I haven’t grown him for 20 weeks to give up on him now. He hasn’t overcome the Amniocentisis and having low amniotic fluid for me to give up on him now.

So out of my Two horrible decisions, I choose to carry on. I choose blind faith, I choose life. I choose to let him fight and have a chance, because a chance instead of certain demise is what will get me through this.

Either way I have to labour, either way I will meet this little man, but one means I will meet him after his eyes have closed forever, after I have stopped his heart from beating and one means that I might get some time with him, no matter how small that time may be. 

Tonight as I lay in bed, I felt baby boy move for the first time. I didn’t think that moment would ever come in this pregnancy, but he wiggled hard enough for me to not only feel him within, but to feel him with my hand on my stomach. 

I like to believe that this is his way of telling me to keep going, out of all the days I could have felt the little push of his movements, he chose today (20+2 weeks). Today he was strong enough for me to feel him him, the same day I was offered a termination to end his life. 

Only time will tell how this story plays out, and only entering the world will give us a real look at my little heart warrior. 





Thursday, 19 March 2020

The 20 Week Scan & FULL Amniocentisis Results


Oligohydramnios - Low Amniotic Fluid

The 20 week scan is usually something you cannot wait to experience. To see how much your baby has grown in the weeks following the dating scan, but as mine rolled around I was anything but excited. 

I was actually really anxious, and with good reason.

Those that have been following my pregnancy will know that it’s all been a bit of an emotional rollercoaster. A high Nuchal translucency test revealed 4.7mm of fluid on the back of our babies neck at 10 weeks, we then had a low risk NIPT (Harmony Test) for the three trisomies and began to try and relax and enjoy the pregnancy. Then at a private gender scan the rug was pulled from beneath our feet and we landed flat on our backs, when the sonogropher found a number of ‘differences’ in our baby. 

That threw us back into the waiting arms of fetal medicine, and we discovered that on top of the structural concerns for our little baby, we also had the worry of Oligohydramnios... Also known as low amniotic fluid. 

The 20 week Scan day arrived and was set Thursday 19th March.

Today.

I sat in the local hospital waiting area with Luke and Leo, wondering if they would both be allowed in... Leo was off school as we have been self isolating due to the latest government advice surrounding Covid 19 and pregnant ladies, and lets face it... I don't need anything else to go wrong at this stage.

When my name was called, they advised that Luke would have to stay outside with Leo, so I went in alone. Luke hasn’t seen baby since the last time he was able to take me to Birmingham Women’s hospital weeks and weeks ago, which thinking back was the 12 week Fetal Medicine Appointment.

I couldn’t get my head around how Leo was allowed in to the fetal medicine appointment and even witness the Amniocentisis... but not here. 

I had spent the week from my echo scan to my 20 week scan guzzling water and peeing like a race horse. I hoped and had everything crossed that when the Doppler hit my stomach at my 20 week scan, we would see the baby more clearly because the fluid was returning. 

Of course, that was not the case.

The fluid was now very low, so low that the sonogropher couldn’t measure the deepest pool because there wasn’t one. I believe that there is still some fluid around baby, but the sac is almost comparable to a straight jacket. Baby boy cannot really move and that would explain why I have not felt him, and at this stage I have resigned myself to the fact that I probably will never feel him wiggle from within me.

I had explained to the lady scanning me how this was so far from your average pregnancy, and she confirmed that she had already read my notes and didn’t know how much help she would be to me. I was already aware that this would be the case, so it wasn’t a shock.

All I really wanted and needed from this appointment was confirmation on the amniotic fluid. This lady did her darnedest though, she tried to look at baby in as much detail as she possibly could, and it’s always interesting to hear how people describe the anomalies that they are seeing.

When she looked in baby boy's head she said that the cerebellum ‘looked small but normal’ - I had been told in previous appointments that it was ‘abnormal and small’ but not that it was abnormal just due to its size. This confirmed that it was the right shape, but small.... but considering baby is well below the plotted expectancy for 19+5 isn’t that to be half expected in some way, shape or form?

At just under 20 weeks my little baby boy is measuring around 17 weeks, around 2 weeks below where he should be. Low amniotic fluid does restrict growth, so I would guess that is also to be expected.

Baby boy’s hands were up by his face, it was almost a comfort to know that he could soothe himself with his little hands. This was the first scan since 14 weeks that I had seen the baby’s profile and at least he seems to have resigned from his breech position. To obtain the image you can see at the top of this post the sonogropher had to bring the doppler all the way over to the left side of my stomach, as simple being above baby didn't generate much that looked like a baby at all.

The sonogropher printed me some scans and told me that she couldn’t get a frontal view of baby’s face to look and see if the baby was effected by cleft palete, but in the next breath said ‘but given everything else would it be the end of the world if the baby was born with cleft palete?’

Of course the answer to this was no, it wouldn’t be the end of the world. What I wouldn’t do to bring this little man into the world and give him a fighting chance. 

This pretty much concluded the scan, I was shown back to the waiting area while the report was drawn up. When she brought it out a few moments later she wished me luck, but I could see the sorrowful look in her eyes, she didn’t think that this baby would make it even if she didn't say it.

I have to admit that seeing that low level of fluid had me on the same page. How could a baby grow and develop with such a little amount of fluid? Especially during this crucial time of the lungs developing. 

I explained everything to Luke, and Leo for that matter. We have been very open and honest about all that is going on as ultimately Leo needs to be as prepared as possible for what and most likely will happen. 

We arrived home and I resumed my fetal position on the couch with a large glass of water. I flicked through Netflix undecided on what to watch, then my phone rang. No Caller ID could only be the Women’s Hospital, and this could mean the full array results from my Amniocentisis were back from the lab. 

The Fetal Medicine Midwife Sarah confirmed that she did have my results. I was told that they were ALL CLEAR, there were no chromosome abnormalities with our baby boy. Atleast not anything that they test for.

This should have made me happy, put a big smile on my face and given me hope in my heart, but seeing my little baby on today’s scan with no where to move or turn... there was still a problem. A problem that meant I probably won’t get my baby boy at the end of this long, long road.

A problem that we didn't even see coming, despite all of the other mountains we have had to climb. After passing each test that has come our way, baby boy is still having to climb mountains, but those mountains require him to be in his safe bubble of amniotic fluid, fluid that keeps decreasing, and stealing hope.

I filled Sarah in on the latest scan, I asked if my baby would be in any pain. I was told that he wouldn’t be and that we would go through ‘all the options’ on Tuesday at my next echocardiogram with the consultants. 

I think I can hazard a guess at what the next options may present to me. I’ve been thinking about it all long and hard, and I am just waiting for them to tell me or at least present the option of termination.

 I don’t have it in me to end my baby boys life. 

I’ve already decided that I will stay pregnant as long as I can, I will say no to any offer of termination, I will let my body decide what happens, and I will keep fighting for that little heartbeat even though everything seems so bleak.
 
I am 20 weeks on Sunday - Mother’s Day, it’s just to cruel to let us get half way through this pregnancy after everything that we have been through and done for us to just exhaust all options now. 

I remember writing in a previous post that my biggest milestone was to get to 20 weeks, I’m almost there. Baby boy still has a strong heartbeat and I know that we’re still 4 whole weeks off being ‘viable’ and I most likely won’t get that far... but I have to try. I have to try knowing that even if we did get to 24 weeks that he could be born and we would most likely lose him anyway, but I have to try.

I can't be the one resposible for stopping his little heart beating. I can't be the one to ultimately decide to end his life, and I wont. 

I’m weirdly ok about it all, I am prepared for the worst. It won't be some big shock if anything does happen.

I’ve somehow accepted this, but I can’t give up and I won’t give up. 

Luke has said that he will support whatever decision I have made, and it might sound crazy but I’ve already made my mind up. 

One way or another I’m seeing this through for my baby boy. 

Wednesday, 18 March 2020

19 Weeks Pregnant: Low Amniotic Fluid

19 Weeks Pregnant: Low Amniotic Fluid19 Weeks Pregnant: Low Amniotic Fluid

 I completely neglected to do a pregnancy update last week, and I have to admit that it was because it was such a hectic week. Luke had been away to Italy skiing - I say skiing.. He got 1 day in after they arrived before the resort closed and they were popped onto emergency flights back to the UK. Of course at that point all of Italy was under self isolation measures.. So I had to pack a suitcase and get out before he arrived back so that Leo and I didn't have to self isolate too...

It was not fun sofa hopping and not being able to get comfortable. In fact I slept on a very old mattress one of the nights and suddenly in the middle of the night I began to suffer from Vertigo. I haven't had Vertigo in 2 years, and I can't say I enjoyed it. The following day (Wednesday) was my first day back at work, since we returned from Venice last month (Just as Covid 19 was taking hold...) I had to stay away from work just in case. At that point there wasn't any advice to self isolate, and Leo was welcomed back to school.

This all changed the day of my Amniocentisis when I got a call at school telling me that even though a fortnight had passed since our return... Leo had to stay away from school. None of us had any symptoms so the thought of that just seemed crazy. Leo ended up coming with us to Birmingham, and what a superstar he was. He was in the room while the Amniocentisis was performed and it didn't phase him one bit.

This was the Monday, and I had until the Wednesday before I was due back at work. Of course it was on the Tuesday that my Vertigo appeard, so on my first day back in the office (with Leo in tow) I found myself throwing up in the toilets! I am pleased to report that this has now eased off now, and you may have seen that we have had our first set of Amniocentisis results in!
 
I’ve spent the back end of my 18th week of pregnancy drinking water and coconut water like a lady possessed. I did ask the nurses at my echocardiogram scan if there was anything I could do to maybe increase the production of amniotic fluid, and they said there wasn’t anything I could do.

I had a little google and keeping super hydrated can help in some cases to produce more amniotic fluid. I have been drinking lots of water and added coconut water into my daily drinking regime to try and see if it can make any difference.

At the end of the day it can’t hurt. 

I haven’t felt baby moving at all, or at least I don’t think I have... but that could be down to the low amniotic fluid. It would be amazing to see if I can increase this at all by Thursday; which will be my 20 week scan (a week early) - I’m half dreading it, because I already know what they will or will not see... but at the same time I want to see if the fluid levels have increased. 

There have been a few mornings since 18 weeks where I have woken up and the right side of my stomach is really hard. I can push down and I can feel something, but I don’t know what it is... I did it once and that something did move, but I’m not convinced it’s baby., but at the same time I am not sure what else it could have been? At 19 weeks baby is still super duper low down, which I am told can be normal.

I really thought that by this stage of pregnancy I would be able to get really excited, but unfortunately that is not the case. I am pregnant, there is a heartbeat... but there is so much doubt over how this will all end. I find myself checking Nugget's heartbeat multiple times a day just to hear the reassuring beat of his little heart.

We know we’re growing a boy (I say growing because I can’t bring myself to say having, because having means bringing home and keeping), I can’t look at baby clothes, I can’t get all of Leo’s clothes out of the loft ready to sort through and wash. I can’t buy anything like the bedside crib, in many ways I don’t actually feel pregnant.

I feel like I’ve been robbed of many of the things pregnant ladies take for granted in a healthy pregnancy, I didn’t get to do our gender reveal, I haven’t been able to excitedly shop and I haven’t been able to glow when people congratulate me on our newest addition.

This week I was caught off guard as I discussed the current Corona Virus situation at the school gate when another Mum innocently said 'I don't mean to be rude... But are you expecting'. It should have been so simple to answer, but instead of saying 'Yes' straight away, I wasn't really sure what to say. I am pregnant, but whether there will be a baby at the end of it all... I cannot say.

I’m staying positive and taking each day as it comes, I’m sitting around and resting more, drinking more and hoping that this helps. 

Right now I feel that the best case scenario out of all this will be delivering a premature baby, and then allowing the medical professionals to do their very best. I don’t think we would really know what we are dealing with until birth as these scans don’t really provide a comprehensive view.

I’m trying to have blind faith that we get our boy at the end of all this. That we get to tell our tale, with a happy ending that goes against all the odds. 

Through it all though I just feel like I have to keep holding on and fighting for this little life. People say I’m brave and strong, but I am just doing what I feel is best, and sometimes even that is guess work.

It is hard to keep the flame of hope alive when every appointment brings more bad news, but while baby is growing and his heart is still beating... I will continue to fight for him.

Today is Wednesday, and as of today we are in self isolation to shield ourselves from the crazy outside world and Covid 19. Work have been amazing and sought advice from HR, the instruction is that I go home and self isolate for 12 weeks. Before I left work I managed to almost cry twice, anyone would think I had lost my job. I am just super lucky to work for such a good team of people, so I will be using the time to stay at home, rest and of course home school Leo.

Due to my need to self isolate now, Leo is off school before the official closure on Friday, I had to go and pick him up early and ended up crying at the head teacher and SEN teacher due to all of the worries surrounding the pregnancy, and I guess feeling emotional about leaving work for a potential 3 months. The crazy thing is so much can happen in 12 weeks, It will be June, I could be 31 weeks pregnant by then.... I could have had the baby by then?

I could have lost my baby by then....

Self  isolation is the current plan, and that is what I am doing. I can't help feeling like a fraud, I am pregnant right now... But who knows what the next 12 weeks will bring? What we will find out? What decisions I will have to make?

 Thursday is my equivelant to a 20 week scan, I will be 19+5 and I think I am more nervous for this particular scan than I am about the Fetal Medicine appointments. The difference is at this appointment they will expect to see your typical baby, completely healthy. I don't know what we will see tomorrow....

Fetal Medicine called at 19:30 this evening and when I answered I was shaking head to foot. The full array result is not expected until at least Monday, but seeing that No Caller ID flashing on the screen set my heard racing. It was Sarah the Fetal Medicine Midwife, she's been speaking to the consultants to try and get me seen again as there was nothing booked in. I am really thankful for this, especially with everything that is going on right now, so I should hopefully have a more detailed echocardiogram scan next Tuesday 24th March - Back to Birmingham we go!

Week 19 has been a long update, if you have made it this far thank you.

Hopefully I will have more (happy, positive) news tomorrow.

But for now it is more waiting in this already uncertain pregnany.







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.

Monday, 9 March 2020

The 18 Week Amniocentisis

Amniocentisis at Birmingham Womens Hospital - Fetal Medicine

Monday morning finally rolled around, my sister in law, Leo and I all hopped into the car to head to Worcester (I will most likely address why Leo was there in a future post).

I knew I was heading into the eye of the storm again, that my few days of ignorance were about to be blasted out of the water, but still I had to go and hear what the consultant at Fetal Medicine thought about our little Nugget.

We arrived in Birmingham with time to spare, by now I know exactly where to park and how to get to where we need to be. We set up residence in the cafe and looked over the previous scan notes. My sister in law felt positive but I knew by the end of this appointment that feeling would have been knocked out of her the same way it had been for me over and over again.

We made our way towards Fetal Medicine and were pretty much shown right in. Instead of being taken straight to the sonography room like in the previous appointments, we were taken to one of the little sitting areas where I signed my consent for the Amniocentisis procedure that they were going to be carrying out.

They talked through what would happen, I signed the consent form and we were taken into the all too familiar room where the scan was going to take place. 

I hopped up onto the bed and the scan commenced straight away. There were 2 consultants in this appointment and they took it in turns to do a thorough scan of little nugget. 

They confirmed all the findings that had been found at the previous scan, looked at the heart in some further detail and told me that the amniotic fluid was now considered low at 1.4cm in the deepest pool.

This could be a sign that the kidney’s aren’t working as they should, which of course sent more alarm bells ringing. The second consultant Dr Kirby took over the scan and concluded with the first consultant. 

I’ve learned that these scans are usually performed in complete silence, the dr’s concentrate on what they are looking at and it doesn’t feel like the time to ask questions. I can’t help but feel though that baby measuring smaller and being in more awkward positions (combined with the low amniotic fluid) will mean that it’s harder to see exactly what is going on, and does leave room for error.

Error and hope.

With the scanning side of the appointment wrapped up, they made preparations for the Amniocentisis to take place. A midwife joined the 2 consultants and they began to prepare my tummy for the procedure. 

A very cold solution was poured all over my stomach to clean the area, paper towels were placed over my upper tummy and where my leggings finished to keep the area clean. They spoke to me as they were preparing everything so that I knew what was going on, I saw the needle come out but I couldn’t see much from behind the paper towels.

I was told that the area wouldn’t be numbed (although I can’t remember why they said this was the case), in fact it all seems a bit blurry now. I felt so calm before the procedure, but when it was actually starting I felt a bit uneasy.

The baby was still visible on screen but I couldn’t see exactly what was going on, they told me that they were ready to perform the Amniocentisis and that I needed to stay very still. 

I thought the staying still part of all this was going to be a doddle, I’ve had blood taken many times and I never flinch, but of course the Amnio is a needle going into your lower abdomen, which as it turns out is a very sensitive part of your body. The needle pierced my tummy and I automatically flinched, I couldn’t help it. They told me to stay still again like I had any control over my body at that precise moment in time, of course I didn’t want to be moving, I knew exactly what moving might mean for my baby. 

It’s like when you get stung by a bee, you automatically move away from the sting, and that’s the only thing I can compare the Amniocentisis  too. 

A bee sting.

It wasn’t painful, and when the needle was in you didn’t even notice it was there, I did feel a bit conflicted about having amniotic fluid taken out of the baby’s sack when it appeared that it was already too low. 

It was all over as quickly as it had started, the needle was taken away, the paper towels removed and my tummy dried. My tummy just felt normal, like nothing had happened but I was very aware that I needed to pee again! 

I needed to go back to the little room for the debrief, but first I needed to pee. It was only when I went to pee I realised that I had shooty pains in my lower tummy. It felt like my insides were going to fall out, and the shooty pains felt like what you might have when you have a bladder infection. 

I soon worked out that the shooty pains were worse when I was walking around, not so bad when I was sitting. I went and found a seat in the same little room we had been shown to when I had arrived, and Dr Kirby talked me through what they had seen.

His prognosis was bleak, 'if multiple anomalies confirm, the prognosis will be adverse in terms of mortality and morbidity whatever the underlying aetiology'.

To me that reads, that if all of the findings on the scans are 100% there, regardless of whatever is wrong with Nugget, there won't be a good outcome for baby.

The consultant expected the Amnio results would highlight a Chromosome Anomoly, and I could tell he was pondering Trisomy 18 - Edwards Syndrome and he mentions it more than once in the sonography report that was later handed to me.

I was basically told that the abnormalities on their own would usually be ok, but it was the combination of the abnormalities that pointed toward them being underlying issues in a bigger picture.

Ultimately this appointment solidified what I thought was about to happen. I expected the Amniocentisis to come back and confirm the diagnosis of Edwards Syndrome. My next step then would be to be booked in to have labour induced, to meet and say goodbye to my baby all at the same time.

I had accepted what I was told at my scan on Tuesday, so this time no tears fell. The consultant must have thought I had a heart of stone, this time I stayed composed and accepted everything that I had been told. 

I left the hospital knowing that I would be back on Thursday for the echo scan, but I knew that at some point on or before then... I would have the first set of results back.

I didn’t feel anxious, I didn’t feel like I was waiting for these results, because I didn’t feel that they would have good news. 

Thankfully baby came through the Amniocentisis which for me is a big milestone in itself. The shooty pains weren’t overly painful and didn’t require me to take any paracetamol for them. 

Over the next few days it was like it had never even happened. 

Thursday, 5 March 2020

17 weeks pregnant

17 weeks pregnant - Cystic Hygroma

This week I didn't take a picture of my growing tummy.

This week has been a blur, and one that has not been easy to navigate.


Usually the further into a pregnancy you get, the more closure is bestowed upon you. In my first pregnancy I looked forward to the scans, there were never any red flags, worries or doubts that I wasn't carrying a perfectly healthy baby boy. 

My last 2 pregnancies have shown me two very different sides of the coin, one resulted in miscarriage, and my current much wanted pregnancy is teaching me yet another lesson. Potentially the hardest lesson yet, one that plunges me into the unknown and doesn't guarantee me that happy ending, even though right now there is still a strong heartbeat.

At a private gender scan on Saturday everything changed and I feel like I am mourning a baby that is still very much alive and fighting for life.

Any reassurance we had gained from the fluid on Nugget's neck retreating by 12 weeks was floundered, we were thrown back down the rabbit hole and have been free falling ever since.

It is now Monday, I am 17 weeks pregnant. I text Nicky (you will know her from my previous posts), and within a few minites she replied. I am so thankful for this lady, and it looks as though she will be squezing me in at Worcester Hospital at some point this week.

That second opinion was on Tuesday 3rd March - and if you have been following our experience so far, you already know what that brought to the table.

Which is just beyond incredible, Fetal Medicine called and cannot see me until Friday. The wait already feels unbearable, I just need a second opinion and a chance to ask my questions, have an idea of what they are suspecting. 

Suddenly it feels like the high NT reading could in fact have been pointing towards all of this, chromosone abnormalities aside they are also linked to fetal heart conditions. Which of course aren't picked up on scans until the babies reach a size where they can be looked at, like now.

I have of course spent every waking moment following the scan trying to make sense of what I have been told, Google of course hasn't helped, it hasn't really told me anything.

I knew that taking Leo into school this morning was going to present me with lot's of questions from people all wanting to know if we were having a little boy or a little girl. I knew I could half answer the question without getting emotional, I said 'They suspect a baby girl, but their legs were firmly crossed'.

It was the question that always inevitably follows that I knew I was going to struggle with 'And was everything ok?'

I can't lie, and my face can't lie. Nor can my voice as the tears start to spill. All before I have even got Leo into school.

How can I answer is everything ok when right now it looks anything but ok?

It's been a rollercoaster of a week, and one where I pretty much took a step back from the pregnancy and ultimately my baby. I know that in the next couple of weeks I should start to feel her move, but right now aside from my tummy starting to feel a little harder, that is the only telling sign.

It's been a tough pregnancy, but week 17 for me may have been the week that broke me. I miss the period of time between 12 weeks through to week 16 where we were fianlly getting excited and even buying things.

Week 18 is going to see me having my Amnio and going back into wait mode.

I have hidden away this week, while the rest of the world seems to be self isolating because of Covid 19, I have just wanted to avoid people. I have just wanted to be on my own. It's taken me a few days to sit down at the computer and write this week up, I guess as it's a week that I would rather pretend didn't happen, but equally it's a monumental week in how this pregnancy may end.

It's a different type of pregnancy update this week, but I have decided that I will be taking a bump photo for week 18, I have to pick myself back up and capture what is happening, regardless of how all this does end.

Right now I am still growing my baby, right now Nugget is tucked up safe and her heartbeat is still strong.





Suspected Chromosomal Anomaly: Keeping Hope


The scan from 12 weeks. How can such a perfect looking baby be so poorly?

It’s coming up to 2am, I have been reading all sorts online in the hours since I came to bed. Luke is fast asleep next to me, but sleep for me will not come.

Since the scan on Tuesday I have to admit that I felt defeated, that this pregnancy was destined to end without a baby. Although we don't have an official diagnosis, I took the prognosis to mean one of almost certainty. I felt myself take a step back from the pregnancy and my baby and somewhat disconnect.

I don't know what changed today, whether I just needed time to absorb what I had been told, whether my gut feeling had taken over the inclination to just lay down and not move, or whether the fight for my babies life won out, something made me take out the report from the scan, have another read and start collating information online.

I started out reading about Edward’s Syndrome and how bleak the diagnosis is. I have been in forums and tried to see if there is any hope, any hope at all. I know for some people they would carry on just so they could hold their baby for anytime that they may have, but for me Edwards is just to cruel... If it is that I will have to take actions to ensure my baby feels no pain.

Something in me though doesn’t believe it is Edward’s Syndrome (T18), It’s just a gut feeling, a sense that I believe is tied to the harmony test coming back low risk for the 3 main trisomies. I can't get my head around how it would come back low risk for something that my baby would have?

It has to be something else...It has to.

Following the scan on Tuesday I haven’t listened to baby on my at home Doppler. I didn’t see the point, I know the heartbeat sounds as it should, but I also know what shows on the scan. If this pregnancy was going to end in termination for medical grounds... Why listen to the beat of a heart that ultimately I would be responsible for ceasing, for stopping forever?

I cancelled my belated 16 week midwife appointment, I messaged explaining about our bad news and how I didn't think I needed the appointmnet anymore. I was really dissapointed that she didn't take 2 minutes to reply, not even a short message expressing that she was sorry to hear my news. It's a shame that she is the one person who I feel has let my care down, I have met some incredible people who have gone above and beyond for me... But I don't feel that she has been someone I can go to.

I couldn’t justify going to this appointment after the news, the way I have been has been pretty up and down. One minute I am ok, the next something pulls the rug from beneath me again and the tears don't feel like they will end. I would have just cried at this appointment, she would probably check the heartbeat and tell me that everything was ok, when I know that isn't the case. I already knew the heartbeat sounded normal and healthy. It was the findings on the scan that we’re sounding the alarm bells.

I’ve spent the rest of this week coming to terms with what I had been told. Up until tonight I have to admit that I had lost all hope, I have been reading into terminations for medical reasons because I don’t want to inflict pain on my baby. I don’t want to see them suffer. I was even reading into baby cremations and ash jewellery.

My internet searches went from your typical pregnancy symptoms to tragedy overnight.

I’ve had moments where I’ve completely lost it, like Wednesday when the pushchair I had ordered arrived. I had literally ordered it the night before the gender scan when I believed everything was ok, ironically if I had waited one more day, I wouldn't have ordered it.

I cried angry tears, sad tears and disappointed tears. Then somewhere among it all something dark and twisty made me whole heartedly laugh. 

Tomorrow morning I should have been sitting my appointment at Fetal Medicine in Birmingham, but for some reason yesterday they called to cancel that appointment. I now have to wait the entire weekend to see them and finally get my Amniocentisis that will lead me to more answers, and more difficult decisions on this already rocky road.

Part of me is annoyed and incredibly angry that I have to wait even longer for more answers, but there's another part of me that is relishing the time. For a few days atleast I can pretend everything is ok, I can live in ignorance and wish for a happy ending. 

I refused to check the baby’s heartbeat at home right up until tonight, but something changed within me this evening. Despite everything that happened this week, despite where my mind had gone I don’t feel I can give up all hope just yet.

I need to pick myself up from the position I have curled up in on the floor, look into every scenario, and have hope that it may not be Trisomy 18. It could be something else. Until the results from the Amnio come in, I have to believe that there is hope.

I’ve been reading everything I can, trying to ponder if it could be any other condition than trisomy 18 and a promised death sentance.

It feels weird saying I’m willing any other condition to fit, to almost will a diagnosis on your unborn child, but when you have been told it could be a condition that means you won’t get your baby at the end of it, a different condition opposed to no condition is the next best thing.

From what I have been told my baby is showing on ultrasound, there is a chance it could be a couple of other conditions, but I can't help leaning toward Noonan Syndrome.

From this latest ultrasound these are the notes that I have on my report:

- Despite BMI of 20 very difficult views as baby very curled up and breech.

- Placenta appears bulky.

- Posterior Fossa appears abnormal with dilated 4th ventricle.

- Lateral Ventricles 5.4mm - This is a normal measurement.

- Dolicephalic head shape (longer than expected).

- Unable to get clear views of spine (the scan images were not a good view).

- Bladder not seen (but it has been on previous scans).

- Heart views abnormal: Abnormal Axis, deviated to the left. Rate normal but brief bradycardia (where the rate drops, and this can happen in perfectly healthy babies). Only Pulmonary artery seen in 3VV. Left outflow tract seen arising from Left ventricle but unable to demonstarte in 3VV. Right heart appears enlarged.

- Unable to visualise face clearly (thanks to the view again...)

- Feet apear rocker bottomed.

- Aware high chance of chromosomal anomaly.

Not forgetting that at the gender scan, it was mentioned that it looked like the baby had potential scolosis of the lower spine (I am learning so many new medical terms in this pregnancy), although the spine wasn't visualised for further comment on this occasion.

The consultant did talk about potential Hypoplastic Heart Syndrome, so that could account for the heart, but I can't recall if she said Left or Right. What I need to understand is whether the findings on their own without Trisomy 18 give my baby a good chance. I need to have the echo scan to find out more about Nugget's heart, and I need the views to be better of baby.

I am wondering if a fetal MRI could be an option, or if an internal scan will provide a better insight to what is going on with baby. With the views on the scan being less than poor, I need to be completely certain that this is not affecting the findings.

 For now all I can do is wait, and hope. Even with all of the above listed against my baby, if it isn't Trisomy 18, then there is hope. If there is a quality of life for my baby, I will fight tooth hook and nail for life.

For now all I can do it wait and hope.



-

Wednesday, 4 March 2020

A Second Opinion: Chromosomal Disorder?


Edwards Syndrome T18

They say life is un-fair, but I have always been a happy go lucky kind of girl. When I get kicked, I get back up, dust myself off and try again. I think this time I may have been kicked a little too hard, I don't want to get back up, I don't want to dust myself off and I definetly don't want to try again.

They say lightning doesn't strike twice, they say that pregnancy after a loss is your rainbow baby. No one ever said that this pregnancy was going to break me beyond any recognition of myself. 

After the gender scan that ended in tears on Saturday, I got in touch with my life line Nicky. A lady that has been incredible throughout this entire process. From finding the fluid at 10 weeks, to being available at the end of the phone when she didn't have any obligation to actually help me. She did so out of the goodness of her heart, and I will be forever grateful for that.

I text Nicky first thing Monday morning, I told her about the gender scan and the abnormalities that were flagged. Nicky was over at Worcester Hospital that day, she put me in touch with midwives based there, they arranged for me to see my consultant for an ultrasound the following afternoon. 

I think I had convinced myself of what was going to happen, I think I had accepted that there was something. What that something was though I didn't know, and I was hoping that the scan may shed more light on what was going on. Hoping that it was something that we could work with and ultimately bring our baby into the world.

My friend came along with me to this scan as Luke was on a course, this appointment was one that I know I wouldn't have been able to obtain if it wasn't for Nicky. I know if I had simply called the hospital, they would have told me to wait for the Fetal Medicine appointment that had been scheduled for this coming Friday... So I told Luke to keep his course going, that we probably wouldn't get much more information at this scan, that this was just to double check the concerns.

This was the first time I had met my consultant, she's a wonderful lady, very thorough, to the point but caring at the same time. Someone that I could work with, I have realised that I need to know what they think, I need facts and honesty. I deal better with the truth than speculation.

I lay there on the consultation bed as she looked around at what was visible of baby. The views were not good, I could see flashes of spine, heart and head as she inspected them more closely, but nothing that resembled a baby. I have found this at a few of the scans, but whenever Nicky has scanned me I have seen an entire baby. 

I had been asked to come with a full bladder, but I knew that I would be asked to go and empty as that seems to present the best views of baby. I was first asked to empty half, and then when that didn't help, I was asked to return with an empty bladder.

The consultant told me that baby was really difficult to scan, that they still looked very curled up and at this stage (17 weeks) they would expect them to be less like this now. I stared at the monitor that was angled towards me, and we sat in silence as she inspected Nugget and concentrated.

I glanced over every so often to see if her face gave anything away, but the only thing I could tell was that she was really thinking about what she was seeing. I watched her label the 4 chambers of the heart, look inside babies head and saw a foot pop into view. 

Eventually the consultant spoke, and she went through so much more than anticipated with me. She had concerns, she confirmed that eveyrthing that had been seen on Saturday was there (my second opinion), the heart tilts to the left and appears abnormal, she only saw one pulmonary artery in 3VV (Im not sure what 3VV is) and the left outflow tract was seen arising from the left ventricle but she was unable to demonstarte in 3vv (we would need a detailed heart scan with fetal medicine). 

The posterior fossa appears abnormal with an enlarged 4th ventrile and Nugget's head looks dolicephalic (long and cone like is my understanding). The babies feet appear rocker bottomed and there were things that couldn't be looked at due to the visibility conditions...

I asked her what this could point towards, not for a second thinking she would tell me.

All of these markers together point towards a chromosomal anomaly, and she believed that it was Trisomy 18 - Edwards Syndrome.

Ironically and heartbreakingly this is one of the trisomies that the Harmony Test came back low risk for. I thought we had been cleared against Downs, Edwards and Patel.

Edwards Syndrome is caused by the presence of a third copy of all or part of chromosome 18. It affects many parts of the growing babies body, often results in smaller babies and they are prone to heart defects, small heads, small jaws, clenched fists with overlapping fingers and severe intellectual disabilities.

Edwards is not a nice condition, and right from when I first heard about it 7 weeks ago, I knew this would be one of my worst case scenarios. I said right then and there that this would not be a quality of life I want for my baby, but not once did I expect this to be the actual outcome. Babies often die in the womb, or not long after birth. If they do live there are ongoing problems and many die within the first year.

I don't think I could put my family though that. I can't do that to Leo.

I was shown to a little room away from the waiting area and the many happily pregnant ladies, Nicky came in to see me and gave me a hug. She said how un-fair it all was, and boy did I feel that. It feels incredibly un-fair but as much as I want to shout and scream that, what's the point? What is it going to change? Achieve? 

Absolutely nothing. 

I was shown out the back so I could avoid seeing everyone, I drove home. I picked Leo up. As soon as we got in the car, he asked me how I had gotten on with baby, and I couldn't lie.

I was going to wait until Friday to update him, but Leo deserved to know. I feel like I have dangled carrots of what could be, and then ripped them away, not once but twice. 

I have told Leo he is going to be a big brother twice, and each time I have taken it away again.

Leo fell into my arms and didn't move, when he looked up he had tears trickling down his face. The what could have been, the joy that we should feel just flashes before your eyes and dissappears like the spark of a firework in the bleak nights sky.

Nothing is set in stone right now, we need to do the Amnio this Friday, have additional scans and wait for the results. I know what has to happen if it is Trisomy 18, but if there is a chance it's something else, I need to know. 

For now though I feel an acceptance, this wasn't anything I did. This was pre-determined at conception, just like the gender, just like how everything else is put together. 

It doesn't make it any easier to digest, but I know how I have to proceed, and when it comes to making those hard decisions I know that I need to be armed with all the facts, have complete certainty and go from there.