Five Years Later: Louis, Love, and Life Rebuilt

Five years.

It’s hard to believe it’s been that long since I held my baby boy for the first—and last—time. Five years since my world shattered in ways I never thought possible.

In April 2020, life as I knew it came crashing down. I was 28 weeks pregnant when my ex-fiancé betrayed our family unit. I was carrying a terminally ill baby, and overnight, I found myself alone—heartbroken, terrified, and completely unprepared for the road ahead.

Back then, I kept the breakdown of my family a close guarded secret for weeks. I didn't whisper a word, I took solitude in the quiet, and walked. I walked a lot. Walking off the pain and isolating myself further in the already isolated world of Covid Lockdown. It's funny how time spurs you on and gives you perspective, because in the same breath, it doesn't always grant forgiveness. Forgiveness for me, just isn't possible. I live and let live, but I will never, ever forgive. 

Louis was born at 37 weeks in the middle of the night, meaning for me that he will always have a 2 day birthday. The 21st July being the day I laboured and made that journey to meeting him, the day he was alive. Being born in the thick of night meant, that he was gone before the sunrise even appeared in the sky on the 22nd. Although Louis's birth certificate states he was born on the 22nd, I dedicate 2 days to him every year.

He was beautiful, perfect, and so heartbreakingly fragile. He lived for just two hours. Two precious hours that I will cherish for the rest of my life. He passed away in my arms, and with him went every plan I had made. 

My baby boy was gone. 

My relationship was over. 

My home was lost. 

My future, blank.

I didn’t know then how I would survive it.

But here I am, five years later, standing in a life I never could have imagined back then. Somehow, I survived, and I didn't just survive, I found myself again, I stood tall and found my own happiness on an entirely new path. 

I found that I was exactly where I am supposed to be, surrounded by the people that I was destined to do life with. For just how hellish 2020 was, the times I didn't think I would make it through... I look back now and know that everything happened for a reason. Everything happened to put me on this new path, and to teach my the hardest lessons of my life.

Because what 2020 tore apart, life has rebuilt in its own quiet, unexpected way.

I have a new partner —one who is kind, present, and loving. My best friend, and as of May 27th 2025... My husband!  I am pregnant again, carrying Louis’s little brother, and this time I feel supported, not abandoned. We’re buying a home. Building something solid. Something rooted in love, not fear.

It’s strange, isn’t it? How everything can fall apart and test the very fibers of your being—and yet, somehow, you find yourself exactly where you’re meant to be.

Back then, I thought life was punishing me. But now I realise it was redirecting me. Slowing me down. Making me listen. Making me choose myself.

Everything went wrong until I started listening to my gut, saying no to what wasn’t right, and trusting that better was out there—even if I couldn’t see it yet.

Louis taught me how to love deeply and lose bravely. He changed me forever, and I carry him with me in every decision I make. Louis is spoken about all the time, his name and face enter my mind each and everyday. 

He may have been gone for 5 years now, but I remember him every single day. I know he’d be proud of how far we've come. Of how I kept going when everything hurt.

So today, five years on, I honour my boy. I honour the pain, the growth, the transformation.

Life didn’t end in 2020. It just began again.

Happy 5th Birthday, Louis.

I wonder who you would be today, what you would be doing. The memories we would and should have made. I know that you are up there watching over us, and helping me grow your baby brother to be big and strong. 

You are always and forever in my heart <3

You’ll always be my favourite what if.

19 Weeks Pregnant: Back Under the Consultant’s Wing

On Monday 8th July, I walked back through the familiar doors of Worcester Hospital for my consultant appointment — now 19 weeks pregnant. It’s hard to believe the wedding was already six weeks ago. Life had shifted quickly since then. We were firmly back home and gradually settling into the calm after the chaos of our wedding and honeymoon.

Both Graham’s and my houses were sold, with completion just around the corner. We were full of excitement as we prepared to buy a beautiful Grade II listed family home in a local village — the kind of home that seems made for noisy breakfasts, muddy wellies by the door, and children running through the halls. It already felt like the perfect space to raise a family. The idea of bringing our baby boy home there in November felt incredibly special.

But first, came the hurdle of this scan. The 19-week consultant appointment. A chance to get a proper look at how our little man was growing — and, most importantly, to check his heart again after that sneak peak we had back at week 17. This was the moment we were hoping to finally exhale, to let ourselves believe that this time no matter what, we really were bringing our baby boy home.

My second son, Louis, was born in 2020. He had a congenital heart defect called Tetralogy of Fallot. While it was a condition that could have been surgically repaired after birth, Louis also had extremely low amniotic fluid throughout the pregnancy — which meant his lungs never developed. The combination of those two complications was ultimately unsurvivable. Louis lived for just a few precious hours.

Louis wasn’t Graham’s son, but Graham has been an incredible support through my pregnancy with him, my friend back then — patient, loving, and steady. He knows how much is riding on each appointment, each scan, and he came with me to this one as he has done all of them so far, both of us hoping for peace of mind.

Sadly, my usual consultant wasn’t available that day. I’ve formed such a strong bond with her, and she’s walked with me through every step of this journey. The stand-in consultant was kind and professional, but that deeper emotional connection was missing — and for me, that made the whole experience feel a bit more clinical, a bit more fragile.

As the scan began, I stayed quiet. I’ve learnt how vital these scans are, how much they can reveal — and how much hangs in the silence between each spoken word.

She carefully worked through the anatomy check, taking time to show us our baby boy’s heart and the way the blood was flowing. After a while, she said what I had been waiting for

“His heart looks fine.” Although we had the scan a few weeks back which set us up for this good news, it was nice hearing it officially at the scan where the thourough look was taking place.

Then came another sigh of relief — the amniotic fluid around him was still at a normal level. Something so simple, but after Louis, so significant. Two of the biggest hurdles… and we were clearing them.

She continued with her checks — brain, cerebellum, bladder, kidneys — and then she reached his little feet. That’s when she paused. A long pause. I knew immediately what she was looking to rule out club foot.

Baby boy had his feet crossed and absolutely refused to move. She jiggled my tummy, poked gently, tried everything — but he was not having it. Eventually, she was able to see the left foot and said it looked completely normal. But the right foot? He just wouldn’t show her.

She was clear with us: this didn’t mean there was anything wrong — just that she couldn’t see the right foot well enough to confirm. But for someone who’s experienced the trauma of loss, even words like “we just couldn’t get a view” can be enough to send you spinning.

I kept telling myself, “Even if he does have a poorly foot, we can fix it. He’ll be okay. He really will be okay.” But there was a moment earlier in the scan that kept playing in my head — when she asked, “Is this your first scan this pregnancy?” It left me wondering whether she had seen something that concerned her. And that little seed of doubt, once planted, is hard to ignore.

Eventually, I managed to talk myself down. Nothing had been found — just not seen. All I had to do was make it through the next few days until the 20-week scan on Monday 14th July, when hopefully, we’d get the reassurance we needed.

Because beyond that scan lies a dream I’ve held onto ever since we got that positive pregnancy test back in March.

To have a healthy baby.

To stay low-risk.

To have the water birth I’ve longed for.

To finally walk out of those hospital doors with my baby boy in my arms.

And to bring him home — really home — to our forever family house, where he belongs.

Louis' Funeral - The One Where We Said Goodbye

 I remember reaching viability in my pregnancy with Louis after being told that we most likely wouldn't get there far. It felt like we had reached a tremendous milestone and that perhaps there was real hope at the end of this dark tunnel we had been shooting through. For me it meant that there was a chance at life for my baby boy, but it also meant that if he did succumb to eternal sleep, that at least we could give him a funeral. 

Inevitably we did have to say goodbye to Louis after his arrival at 37 weeks. 

In the weeks following Louis' birth, instead of nursing him in the thick of night and watching his little face dance with gassy smiles, I planned his funeral. 

I sat writing quite a lot during this time, poems that at the time I thought were just for me as I tried to make sense of all that had happened, but ultimately ended up sharing very publicly in the program for Louis' funeral and later had read out during the service. 

I poured my heart and soul into those pieces, sitting at the breakfast bar in the flat alone just letting words flow down onto the notes document before me. 

I had never organised a funeral before and didn't have a clue what I was doing. I had a wonderful funeral director who really took me under his wing. He was a man that I had known through my job over the years and was a real treasure during those days and weeks. After we had dropped Louis off with him, he let me know that I could just pop by and see him whenever I wanted to, and I did do that quite a few times in the time running up to the funeral. 

I remember being asked to pick out a coffin for Louis, a coffin. 

Not a Moses basket or cot. 

A coffin. 

Funerals for babies don't usually cost you anything and somehow it is all taken care of for you, the coffin we chose was included, had we wanted anything different then we would have had to pay something toward it, but this little coffin was what I would have chosen regardless.

As soon as we had chosen the coffin, this is what Louis stayed within while at the funeral directors. He looked very much at peace and the lady who worked there told me that she would give him squishes for me when I wasn't there. The idea of him getting love and cuddles in my absence put my heart at ease.

I had opted for a cremation for Louis and a non religious service. I wanted this day to be all about the journey that we had gone on together over the last 9 months. My words were more fitting than anything that could have been pulled from the bible. I wanted it to be personal.

The funeral had been booked for the 7th August 2020 at 10am.

The day before my 31st Birthday. 

I had asked everyone to bring a sunflower and wear bright colours. No black. 

I had found my Louis dress, a white summer dress covered in sunflowers.

We were still in the midst of the covid lockdown and although funerals were happening again now they were limited to 30 people. This just felt crazy to me, I knew there was a long list of people who wanted to come along to say their first hello's and final goodbyes to my little baby boy who didn't get to stay.

I remember one of the ladies who worked there clocking that it was a babies funeral and abolishing the 30 person rule. I was incredibly thankful for that gesture.

The minister who had performed Louis' naming ceremony at the hospital had very kindly offered to take the service for me. This felt like exactly the right thing to do, he had been there in the immediate hours following Louis' arrival and had got me through that very first day. 

On the day of the funeral the heat wave was persisting, it was an absolutely beautiful day. Not how you would expect the weather to be. We made our way back to the funeral directors and saw Louis in the tiny white casket. He looked at peace, and I took the opportunity to give him one final squeeze that had to last for the rest of my days. 

We got back into the car with Louis, and with him in his casket on my lap we made our way to the Vale Crematorium a short 20 minute drive away. When we pulled up there were already people congregating outside as the sun beat down upon them. 

There were easily more than 30 people there, from family members to the midwives, people who had been following our story and hoping for a miracle. 

They were all stood there clutching sunflowers.

The day its self has been left blurry in my mind as I remember back, I recall saying hello to people and walking in to Eric Claptons 'Tears in Heaven'. I can't remember who carried the casket now and placed Louis at the front on the stand. I remember getting to my seat and being to afraid to cast my eyes back behind me, so I just sat there facing forward staring at Louis' coffin. 

The minister delivered the service exactly as I had wished he would. I couldn't bring myself to stand up and face anyone and asked the minister to read out my words, which just happened to be the poems I had put together. The service it's self was made up of poems, my own writing, songs and a second naming ceremony.

There were a number of pieces of music that I needed to be within the service.

J J Heller - Always

Coby Grant - Winter Bear

I made a short video documenting the journey that Louis and I had travelled together. His life had begun many months before, he had grown within me and defied all exceptions that had been placed upon him. I wanted to show that. 

The song this was set to was J J Heller's 'Missing Piece'.

The poems that I wrote for the service are live on the blog

Still a Big Brother

Louis

There wasn't a dry eye in the house that day. 

At some point during the service everyone was invited up to Louis' side to place their sunflowers over his casket. I know I got up and laid mine upon him, but I don't recall if I was first, last or somewhere in between. 

By the end my baby boy was completely covered in sunflowers. 

Then the service concluded.

The curtain enveloped around, and we all walked back outside in the summer sun. 

Louis was now gone. 

There would be no more cuddles, simply picking him up and feeling his weight in my arms. His face emblazoned in my minds eye but now only physically visible in the photos I had managed to take. Louis was now physically gone. 

We didn't hold a wake, some of my friends all went off to the pub to raise a toast to Louis. 

I tip toed off with my immediate family and went out for lunch and a much needed gin and tonic. 

The next day was my birthday, but I really didn't feel like celebrating. 

25 weeks pregnant

25 weeks was a milestone week for Nugget's movements, just like they were with Leo. Up until this week I had to be lay down in order to feel him moving around. I found that at 25+3 I could feel him moving when I was sitting up, and a a day or so later even when I was standing!

 There was one moment where baby boy kicked so hard into my belly button that I actually jumped, and I have even felt movemnts as high up as my belly button. This is the highest movement I have experienced so far.

When I woke up one morning this week I became aware that I could feel Nugget all down my right hand side, almost like he had turned and was now lenthways down my side opposed to laying across my lower tummy beneath my belly button.

It's been so nice having so much movement from him, reassuring me that he is doing ok in there despite everything that is going on. 

This week there were again no appointmnets, we have our next scan next week to see how baby boy is getting on. I have accepted that the fluid around him probably wont magically materialise, and I have accepted that these appointments will never be filled with the words that mean a miracle has happened. 

These appointments are always going to be about preparing me for the worst case scenario, they are always going to be about preparing me for the death of my unborn baby. I have made the decision that I will set mini goals for these appointmnets and if he reaches those markers I will be happy. 

All I really want is for him to keep on growing, putting on size and surviving. For this next scan I would love for him to hit the 1lb mark, and just know that his heart continues to beat strongly. I know that the fluid is gone for a reason... what that reason is no body can tell me, but it is gone. 

Keeping the hope alive has become so important to me, I don't think I could keep going if I was certain he woulnd't make it at the end. I have read so many stories where the outcome looked so bleak, but the babies pulled through in the end. 

I know that whatever happens my little guy is going to have to keep fighting even after the pregnancy, we know he has the heart condition Tetralogy of Fallot, but there could be other factors we need to consider should he defy all the odds and make it into this world. 

One thing that I have been unsually happy about is this, regardless of what happens now. No matter what happens. My baby boy get's a birth certificate, he's a real little person and whether or not I get to bring him home or not... He existed, he has a name and he matters.

My bump is looking rounder this week, more like a baby bump and less like chub. I would love for my tummy to fully pop and to actually look pregnant like I did with Leo. Due to the low fluid and growing a small baby, I am not suffering with back ache or having trouble getting to sleep each night. 

In a weird way it is another aspect of being pregnant that I have been robbed of.

 

I have found speaking out about what is going on in my pregancy refreshing. Back in February we announced that we were expecting, and instead of having to have individual conversations with people about the turn the pregnancy was actually taking, I decided to be quite vocal in what was happening. 

I have done this on my blog and on my personal social media, it has meant that I can update everyone in one go. I don't need to have one to one chat's with everyone I know and get emotional, I can think about what I want to say and how I want to say it before I put it out there.

People have been incredibly supportive, some have even gone as far as saying how brave it is. I don't consider it brave, if anything it's a way of addressing everyone in one go to spare myself. At the same time though I have been able to reach ladies who are going through a similar journey, and we have been able to guide each other on this journey into the unknown. 

I have been caught off guard a few times where people have congratulated me, and I have looked blankly at them wondering what the kind regards are for... then I realise they are congratulating my pregnancy. I should just say thank you, but I can't help but look at them with confused eyes.

It's another week under the belt, another day closer to the 26 week scan that I was told we may not make... But I have high hopes that we will!

 

24 Weeks Pregnant - We Made it to Viability!

This is a milestone week for Nugget and I, a week that I wasn’t sure that we would ever get to. After being told over and over again that my baby may face his demise in what should be the safest place for him, there was always a question mark over whether we would indeed reach viability.

But here we are, 24 weeks pregnant. 

Somehow and some way we made it!

It's a somewhat bittersweet milestone, because I have been told that it probably doesn't really matter how far I get in this pregnancy, that the outcome will most likely see me leaving the hospital with empy arms and a broken heart.

I choose to look toward the path of hope though, I of course listen to everything the doctors and specialists tell me.. But equeally I don't think anyone really thought we would make it as far as we have, and we here we are!

I feel Nugget moving daily now, usually only when I am lay down, that is when his movements are at their strongest. It’s crazy that I have been feeling him move for a whole month now.

Since last weeks scan and more doom and gloom news, I have picked myself up off the sofa where I have pretty much spent the last month drinking water and hoping that the rest may do some good... and decided to get out and enjoy the beautiful weather with Leo through the means of daily exercise.

We have been walking the dog, merely walking ourselves and even bike riding.

My mum told me to ‘be careful’ and I couldn’t help but ask her ‘why?’ - When you have been told that there is no hope, careful doesn’t really enter the equation. Of course I had full intention of being careful, but you can’t help but ponder the thought as to why. 

It’s been a quiet week, and to be honest it’s these kind of weeks that you can almost lull yourself into a false sense of security and pretend that everything is ok. I have found myself doing it after each and every appointmnet, it's a cycle.

I get delivered the bad news, I come home and mourn a baby who is still very much alive. I feel sorry for myself. I take to Google looking for stories of hope, and then I find a way to build myself back up again, clinging to the smallest chance of hope.

When you have been given bad news and have no appointments on the calander, you have no one telling you that your baby is going to die. You can feel him moving and kicking away inside, you can even see your stomach rise and fall as he does so. You can almost make yourself believe that you WILL be bringing your baby home and that everything is and will be ok. 

I’m almost certain baby boy had hiccups this week, I can’t be certain.... and how can a baby with no fluid actually have hiccups? 

I have to admit that apart from the movements, it’s pretty hard to believe that I am actually pregnant and growing a baby. I think when you are dealt bad news, part of you switches off to protect you, an almost armour shoots up and around you to help you distance yourself from the potential of a broken heart.

I lie there in the evenings (he’s most active around midnight) and I just feel him bop away, both my hand's draped over my growing tummy. I refuse sleep while he is wiggling and jiggling around, it almost feels a crime to miss those little moments when you are never sure how long you will be able to enjoy them for.

I lie there in the morning and refuse to get out of bed until I have felt those familiar movements I have grown so fond of. Once I know he is ok I can start my day with Leo.

I’m in good spirits, I still have hope. My tummy is growing (all be it smaller than the average pregant ladies tummy) so I know baby boy has to be growing too. I know that at the next scan he is still going to be smaller, but he isn’t the first baby in history to experience inuterine growth restriction and he won’t be the last. 

While his heart is beating I refuse to give up hope, I have to keep that hope burning otherwise I am just going to lose my mind. 

23 Weeks Pregnant

 

We’re now 1 week away from viability at 23 weeks pregnant. In 7 days at 24 weeks, if this baby boy made an appearance, the medical world could intervene and try to save him. 

Thankfully I can’t see him arriving in the next week or so, even if the dream I had on Saturday night told me otherwise... I seem to be dreaming about my baby boy so much recently, and they are always my favourite dreams. 

The kind of dream that I never want to wake up from, on this occasion baby boy arrived in the world early again. As he has done in pretty much every dream I’ve ever had about him. This time I was lay in bed, I was holding my belly like I always do when I’m in bed, as this is when I feel his movement the most. Nugget pushed his little face firmly up against my belly and you could see the details of his nose and where his eyes would be. 

Then he pulled his body away and suddenly I knew he was on his way. In the dream this prompted 2 strong contractions, and then Nugget was in my arms. For a premature baby he was so strong, he was breathing on his own and it became apparent that his lungs were better than anyone could have anticipated (no pulmonary hypoplasia in sight).

As the dream developed... it became evident that Nugget wasn’t your average baby. Within a few hours he was walking, and then running... he was more like a toddler now than your typical newborn premature baby. 

Then I woke up... 

On Tuesday 14th April I made my way back over to Worcester Royal hospital, I had been feeling so elated since my consultant appointment. They were letting me fight for my baby boy, a section had been discussed and even steroids for Nugget’s lungs. 

I was now 23 weeks and 2 days pregnant, I didn’t think that we would be delivered anymore bad news, but by this point I should expect it I guess.

I sat and waited for my name to be called, the hospital was really quiet due to the Covid 19 lockdown and only the patients being allowed to attend appointments. Once again I was on my own, Luke has stayed at home with Leo, and I went to see baby boy.

I was soon called into the room, the very same room I had been told that Nugget was pretty certain to have Trisomy 18 - Edwards syndrome. 

The scan started right away, the familiar silence ensued as my consultant concentrated and tried to veranda her way around the low fluid. Every so often she would relay the measurements she had taken to the supporting midwife. 

I learned that baby had put on 4oz since my last scan, which although still had baby measuring around 3 weeks behind, he was growing! 

After the scan concluded they delivered more bad news. Baby now had no measurable pocket of fluid, the Oligiohydramnios (low amniotic fluid) was now being referred to Anhydramnios (low to no amniotic fluid).

This was just the starting point for the bad news. I was now advised against a section, against fetal monitoring and it was once again confirmed that my baby was not going to make it in this world.

I was offered another termination.

I said no I would not end my baby’s life. 

I felt pretty defeated in all honesty, blow after blow I have been dealt in this pregnancy. Each time I am thrown down I do dust myself off and rise again. 

I’m not sure if it’s defiance, gut instinct or if I just need to keep holding on to that glimmer of hope, just hoping that Nugget can and will defy the odds and get to come and meet us. 

When the termination was offered the tears fell, I could see the pitty in the consultants eyes, a lady I really to appreciate and admire. She didn’t like telling me these things anymore than I liked hearing them. 

It was decided that I would labour naturally and forgo the section, we will intermittently check Nugget’s heart rate but regardless of any fetal distress, we won’t be going for an emergency section.

I feel confident that I can labour, but I am aware that Nugget May continue to be breech and I have no idea of when or how I will go into labour.

The consultant told me that Nugget could pass away between appointments, my next one being just under 3 weeks away on May 4th. I got the impression that she would be really surprised if Nugget made it that far...

She told me that he could pass away during the birth or immediately after, that his lungs just cannot develop with no fluid. 

I had a chat with the peadatrician who is at the births of babies who need specialist help. He concurred with what my consultant had just told me, but I asked him to be present at the birth anyway. He told me that he would, but the decision on how to proceed would be determined once he was here. 

If there was no hope I was told they would pass me my baby boy so I could share whatever time we had together, and if there is by some chance a miracle, they would intervene.

I left feeling like I had been hit by a truck, but inside I could feel my defiant flame burning still. Inside I knew my baby had a heartbeat, and I knew that I was going to keep marching forward regardless of the odds that I would lose him.

22 weeks pregnant - Fighting for life

The weeks are ticking by, I can't decide if they feel like they are going quite quickly, or if they are dragging due to how slow life has become with Covid-19 and the lockdown that has been imposed on Britain.

I have now been self isolating for 3 weeks, and I am now 22 weeks pregnant. 

I am 2 weeks from viability. 

There are 14 days between being able to fight for life and just having to let him go.

I have accepted that I am on a different path in this pregnancy, there is un-certainty but for me, only one clear way forward, and that is to carry on.

I am not buying things for my baby, in many respects I am just hoping to wake up each morning and still feel his movements, to still hear his heart booming over the doppler. There will be no new baby clothes, no next to me crib and no coming home outfit.

At least..... Not any time soon.

When I woke up on Sunday morning I could feel Nugget popping his little limbs up, hard enough for me to feel the effort with my hand. I immedietly called Leo into my room. He has been waiting weeks to feel his baby brother kicking for himself.

Leo gently placed his hand on my tummy and within a few seconds, he had a few bops to the hand from his baby brother. 

The first contact between two siblings.  

Leo thought it was amazing, and I was so happy to know that he got that experience. There was a time that I didn't think any of us would get to feel his movements, that the straight jacket he was contained within would prevent any movements what so ever, but little Nugget had other ideas and is letting us all know that he is getting stronger.

I've had some dreams during this week, the first one ended not long before I called Leo in to feel his baby brother wiggling around. I was at my parents, and Nugget had decided to come early. I was holding him in my arms and he was just like your typical new born. I recall changing his nappy and getting him dressed, we hadn't made it to the hospital, but he seemed to be doing amazingly...

The second dream was a few days later, I found myself back at Birmingham Women's Hospital, only this time I seemed to be having an appointment in the basement where the higher tech sonogrophy machines were apparently based... I was in a long line of pregnant women who were all waiting to see their little one's. 

Eventually it was my turn, and I was told that my fluid levels were now absolutely fine and that baby could most certainly have a chance at life now. 

Then I woke up....

I've worked out that my levels must have been lower since around 18 weeks, it was classed at the lower end of normal during the scan I had at Worcester, but then classed as below normal at the 18 week Amniocentisis.

Today I had my first consultant appointment, this was luckily with the lovely consultant I had met at my last Worcester scan. It was at the local hospital in my town which was ideal, especially since this was the first time I had taken myself out anywhere in over 3 weeks. I was surprised to see how busy the nearby streets were, but the hospital itself was eeirly quiet.

I had given this appointment so much thought, I had wondered how it would go, whether my requests for what happened for the remainder of my pregnancy would have them class me as barking mad and unreasonable. I already knew how I wanted to proceed and I was anxious that once my notes hit the table, I would be faced with the doom and gloom once again, instead of clutching to that small glimmer of hope.

I walked into the hospital, the reception desk was closed with no one manning it. I had no idea where I needed to go.

I wandered up and down the corridor and saw a group of ladies at one end, I asked if they had any idea where I needed to go, and then I recognised one of the faces. Nicky!

My midwife with Leo in my first pregnancy, the lady who saw me through my miscarriage in July, and the same lady who has been my absolute saviour in this pregnancy. I swore I wouldn't cry at this appointment, but as soon as I saw Nicky I felt insanely emotional.

This golden women got me into fetal medicine so quickly, she's provided additional scans, valuable advice at the end of the phone, and even got me appointments when I have had more worrying feedback from scans, to try and find some clarity in this emotional rollercoaster of a pregnancy.

I owe a lot to this lady, and considering that she is not my assigned midwife in this pregnancy, and actually in a completely different role... I have had more contact and help from this one lady than I have either of my actual midwives.

For the first time since my booking in appointmnet I had my urine tested for water infections and what not, my blood pressure taken and I heard Nugget's heartbeart for the first time other than on an ultrasound (and on my home doppler of course).

I had to chuckle when they exclaimed how clear my pee sample was, I guess from all this water I have been drinking for Nugget I am now super hydrated! Thankfully the sample was clear of any nasties that might put more of a concern over my pregnancy and baby boy.

I filled Nicky in on the Amniocentisis results, and then I was called into my appointmnet with the consultant. Nicky had already told her that I was concerned that my choices might be deemed on the crazy side, but both of these wonderful ladies were completely reassuring.

Not once throughout either of these meetings did anyone speak of termination or ending the pregnancy, and for this I was so grateful. 

It wasn't a very long appointment as I am actually due to go back to Worcester Hospital and the Fetal Medicine team (with this very consultant) on Tuesday 14th April. I chimed in that I already knew pretty much the direction I wanted this to go in. I put forward my wish for medical intervention, for a c-section and steriods for Nugget's lungs before birth.

I laid bare my understanding, and let her know that despite all of this I want to give my baby boy a chance at life.

It wasn't the fight of a conversation I had built myself up for. It was a simple discussion, one that reassured me that I could decide how we play this out. It didn't have to just be a care package, it didn't have to be a natural birth that distressed Nugget.

It could be as much or as little medical intervention as I decided.

I was advised that I would be scanned and baby re-evaluated the following week, following this appointment we could make a plan. I guess I need to think about the gestation of baby when he makes his arrival, and what intervention I would want and when.

Would I want a c-section at 24 weeks? When it's put like that, when he is literally right on th cusp of viability when completly healthy babies have the biggest of fights before them.... Would I really want to put my baby boy through that?

No one knows how far I will go in this pregnany, I think it is pretty safe to say that I won't go full term and I have accepted along the way that the best case scenario for my little man is to be born prematurely.

Ideally I want him to get to 30 weeks, and potentially a minimum of 26 weeks.

30 weeks would take us to next month on May 31st. It is so strange to think that he could make his appearance in the world that soon.

Today's appointment was more positive than I could have invisioned. I feel like I am in really good hands, and I am re-assured that it won't just be me fighting for his life. I will have a team of people who are also fighting for him and listening to my wishes, all the while with them considering my personal needs and health.

It is nice to feel that we have a direction again, the last few weeks since the final fetal medicine appointmnet and Tetralogy of Fallot diagnosis, I have felt like we had just been written off, brushed under the carpet. In the notes the consultant made today, she said 'Mum keen to give baby a chance, but also realises that this is gestation dependant'.

That is more positive than the outright fetal demise I was pretty much promised at my last appointmnent. It's not clairty, but it's a chance.

I just need to hope that he is gaining weight and growing, all be it if he is smaller than your average baby. He just needs to be getting bigger and following his own little growth plan.

That wraps my 22 week update, I would say it has been another good week.

For me everyday that his heartbeats means we have conquered another day.

21 weeks pregnant - Oligohydramnios & Tetralogy of Fallot

I’ve made it to 21 weeks pregnant, and this week has been a much quieter week than the last one. There have been no hospital appointments, no scans and no bad news. 

You could say I’ve been able to lull myself into a false sense of security. My bump has popped more, and I’m feeling baby boy more frequently, and boy is that the best feeling ever. 

I’ve found that Nugget is moving around quite a bit, some days he’s really low down, like right back down in my pubic bone, and then when I lay down (usually at night) I will start to feel him bobbing around. When I wake up in the morning he has been by my belly button, and I feel him wiggling and turning around. 

There have been a few days early this week where I didn’t feel him for a few days, I could still find his heartbeat on the Doppler, but I didn’t feel him. Fast forward to Tuesday night, I lay down in bed and after a little while I could feel him working his way up my tummy until all of his body was by my belly button.

The way he positioned himself made my tummy hard to the touch, and you could feel the bulk of a little baby beneath my skin. 

It was the strangest, most incredible feeling. The baby boy who at one time not so many weeks ago, I thought I would never feel move from within me. Yet after the news last week that he probably won’t make it... I began to feel those very first movements!

Luke has even felt him kicking away now during one of Nugget’s midnight shape throwing! 

I was around 25 weeks with Leo when I first felt him move, so despite Nugget having Oligohydramnios (low amniotic fluid), a poorly heart and potential bilateral talipes (club foot) I can already feel him, and I know he’s telling me to keep on fighting for him and not to give up. 

I feel defiant and hopeful at 21 weeks pregnant, I know what the experts have told me. I know that they know what they are talking about, but at the same time there is something within me that tells me that this could all turn out ok. 

Blind hope into the unknown.

This morning when I woke up my tummy stayed harder, baby boy had been wiggling around before I got up, and while he moves I place both hands on my tummy and stay put until the movement stops.

Last night I lay there for about an hour just holding my tummy as I felt him letting me know that he was there, that he was ok. When he moves it makes me want to stay awake and just have those moments with him, because the uncertainty and prognosis paints a bleak picture that means these sorts of moments need to be seized with both hands.

It's still too early for what it deemed regular movements from my little 21 weeker, but I still worry when I don't feel him move. I wonder if the fluid has reduced more so that he can't move now, that maybe it all got too much and he had to forefit his fight.

I am certain this baby boy of mine is a fighter, he has been fighting his entire short life. He's survived the increased risk of miscarriage due to the high fluid measurement on his neck. He's survived the Amniocentisis, he's survived his poorly heart and potentially his poorly kidneys. He's surviving everyday in low amniotic fluid and as far as im concenerned he's fighting every day for his life.

This week it has been a quiet week at home with Leo, we have been doing our school work from 9am through to 1pm, and then he gets the afternoon to do what he wants. I use this time to lay around and rest in the hope that this combined with lot's of fluids will help me build or maintain the amniotic fluid that we have.

We’ve been busy with his spellings and working on the scrapbook I bought him not long after we got back from New York. 

Next week I have my consultant appointment on the 9th April. I know that this is most likely going to bring more grave news, but I feel ready to face it now. I’ll be sticking to my guns and telling her that I will be continuing my pregnancy.

I will use this time to enquire about the steroids that they can give to babies to strengthen their lungs, and if we make it to 24 weeks, this is exactly what I want for Nugget. 

We are just under 3 weeks off viability right now, and I know I can’t look into the future and see how this ends, but I can’t see him coming any time soon.

I have 2 goals right now. My first is to reach 24 weeks, and then following that 30 weeks. I know they said it doesn’t matter how far I get, the outlook is bleak, but I’ve read some miracle stories of babies born after Oligohydramnios, and despite spending time in Special care, they weathered the challenges and surpassed all expectations placed on them.

It can happen.

Yes we have the added issue of Nugget’s heart diagnosis of Tetralogy of Fallot, but the first issue we have to face will be to see how his lungs really are. 

Right now I’m just trying to enjoy being pregnant, to feel his movements, to feel him physically getting stronger. This means he’s growing, this means he’s trying to get to meet us. 

I’m still drinking as much water as possible, adding in orange juice and coconut water for a good mix. I’m eating poached eggs daily in the hope the extra protein will help him get big and strong!

Right now I’m doing all I can, I don’t know if it will work, but it’s nice to think that all of this may not be in vein. 

It’s nice to think that despite how horrendous this pregnancy has been in certain respects, there may just be a silver lining. 

20 Weeks Pregnant - The Final Fetal Medicine Appointment

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.