Have you heard of megacystis? No? Neither had we until October 2017. We had our first born January 2017 and were still dealing with sleepless nights and constant night feeds when I fell pregnant in August 2017. Completely unplanned and a huge shock. But one we quickly got our heads around and began to get excited for. But I always had a feeling something wasn't right. The day of my 12-week scan I cried outside the hospital telling my husband I couldn't go in. Being forever optimistic, he told me I was just worrying as we had done it all before.

The scan was going well until the end when he readjusted and all of a sudden we saw a huge black circle. The sonographer stopped printed scans, handed us two and said he would be right back.
Panic set in. What was wrong? Definitely didn't see this on our first. My husband continued to remain happy and excited. But I felt sick, crying and panicking. The sonographer came back and asked us to wait in the small waiting room as someone was going to need to speak to us.

The wait was torture. We were surrounded by excited parents to be and yet we knew that we shouldn't get excited at all.

The head midwife asked us to follow her to a side room where she would take my bloods quietly. And explained to us that the baby could have a condition called megacystis where the bladder was not able to empty but we would need to wait to see a consultant on Wednesday to confirm. But first, they would do the normal bloods to make sure no other conditions could have caused it. This was Friday! Bloods would be back Tues and the consultant was not available til weds.

My head was spinning. What the hell was megacystis? Will my baby survive? What does it all mean? They told us not to google but how can you not?!  I got to the car and cried on the phone to my dad who comforted but he, himself had no idea what it meant either. My husband just drove home. Not knowing what to say.

We got home and naturally i jumped straight on google. It took alot of digging to find anything as it doesn't come up alot. Most had surgical terminations. Oh my god! No. I started to hate myself, all the way through I kept saying no something isn't right, maybe we should have an abortion. Its too soon etc. Oh my god did i wish this on our baby?! Will we lose them?!

My mom, mother in law and Hubby all remained positive but I just knew the outcome would not be good.

Tuesday came- bloods all good.

Wednesday came and the wait with excited parents to be cut me like a knife.... the consultant was running an hour late.
By the time she saw us and scanned me i just wanted to go home.
And then we saw the bladder was at least twice the size it was 5 days ago. It was as big as our baby. She explained that sometimes, partial fluid escapes from the baby and the bladder slowly empties but that is RARE. The only way to be certain was to wait 3 weeks until the amniotic fluid was made from baby's own urine and no longer by me.
I couldn't wait that long. The baby couldn't be left that long!
She explained that if the amniotic fluid was not replenised, the only liquid to help the baby's lungs and other organs develop would be the urine, as an acid, the likely hood would be destruction and non survival at birth.
I felt sick! My poor baby. Were they in pain? I couldn't wait three weeks. I persuaded the consultant to see us again after two.

In those two weeks, i began to feel the flutterings and started to show. It was heartbreaking. In all honesty, it was the most torturous wait of our lives. We went back on a wednesday to see the consultant. I couldn't bring myself to look but knew it would be the last time i would see this baby, if the fluid had all gone. The bladder now was huge. The baby was breathing but did not move. No amniotic fluid. My husband who never cries, cried. I turned serious and told the consultant to stop scanning as she had seen what she needed to see and it was cruel for us for her to continue. She obliged. I then wanted to know what happens next.


She said she would recommend a surgical termination and soon. For the sake of me and the baby. I agreed as much as it killed me, I knew it was the right thing but then within seconds she produced a form to get our permission for our baby's remains to join all the other babies like them and be cremated and scattered at aldershot crematorium. I signed it shaking but pleased they would have a resting place. I was then talked through what would happen. I didn't listen. I couldn't.  I was to come back friday, 7.30am, the procedure would take half an hour and I would be home by lunch. What?! My head was spinning. I was handed a pill to make the process easier on friday and left out the side door so we didn't have to pass happy moms. In the car the flood gates opened and I couldn't stop the tears.


My hubby drove in silence. Neither knowing what to say. We held our fb alot tighter for the next two days.

6am friday morning and I was sat in the living room, staring at the bounty photos of my fb and the realisation hit me that this time, no baby, no photos. I was incredibly scared and heartbroken.
We arrived and I was shaking and my blood pressure was through the roof. I saw all the team and then at 8.05, was collected to walk to theatre. Oh my god. After this my baby would be gone. I held my husband's hand so tight and my belly too. The nurse who collected me was so lovely. If i am honest, she is the only reason i was able to leave my hubby at the double doors and lay on the bed. I became obsessed with taking off my underwear and the nurse said not to worry they would sort it. I remember laying there with my blood pressure through the roof and they gave me a sedative to calm me. I remember saying look after the baby please stop him suffering and i was out.

Next thing I knew i was awake, crying and begging for my husband, he appeared within a few minutes and I clung to him. Our baby had gone and i just didn't know what to do. So we talked about random stuff and hugged each other as much as we could.

My consultant came to say everything went well and a piece was sent to the lab to attempt to see if they could find the cause. She also explained we may be lucky and find out the sex of the child we lost. That gave me hope that we would know who we were mourning. Names had already been decided and god my body ached to know. I politely said thank you and hoped i wouldn't ever have to see her again. She laughed and left, to be honest her bedside manner didn't really exist.... amazing at her job but a bit desensitised and i struggled.

My mom arrived and presented me with a necklace with angel wings for our lost baby. Oh how glad i was to see her and for her to give me that. I never take it off.

We lost our baby on 3rd November 2017. 13 days before my birthday. That birthday I asked everyone for money, no gifts could make me feel anything after what we had just gone through, i was still bleeding like after my first and there was a baby shaped hole in my heart. We decided to make memories with our first born so took him to an aquarium which he loved and to see santa for the first time too. It was a lovely day but I wasn't fully there. My family cooked me a meal and got me a cake. I was grateful but still so sad.
I was doing my masters at the time and struggled to hand work in, the support i got from them was amazing and made me feel like people cared. Everyone else seemed to do this caring headtilt when they saw us and our baby was never mentioned for fear of upsetting us. They mattered, they existed!!!!! My hubby struggled as to him, it felt a little unreal because i had felt the baby and been the one who went through it alone and he couldn't take the burdern or the pain from the procedure so he closed off a little.

A few weeks later, the consultant phoned at 9pm to say the tests came back and it was just a freak of nature and sadly no cause. But.... we lost a little boy. I thanked her and locked myself in my mil's bathroom and broke down. We lost a boy, a he. Our Percy. I rang my husband as i was staying at mil's for uni (i'd be back the next day but it didn't feel right not to tell him) it was sad to tell him but also relieving.

When we had a naming ceremony for my fb the following May, my uni chaplin did the last part of a funeral for Percy, we named him, acknowledged him and we all lit candles. We gave him life and peaceful rest.

On the mother's day just after, i had to be with both my boys so we finally plucked up the courage to go to the crematorium. First we laid flowers in the woodland area, we had no idea where he was scattered but i was pulled to one spot so we placed them there and said some words to him. At aldershot there is a baby loss garden with a moon bed to place name pebbles, we decided we wanted to do one for Percy. We went back to the loss garden and sat there. We cried and just embraced the peace. My fb saw i was upset, climbed off my hubby's lap and hugged me. I clung to him and smiled. Having him made us keep going and if we didn't we would have collapsed in grieve.

I did end up needing anti-depressants as I just couldn't manage, I felt like i was letting everyone down as everything got on top of me. I struggled when 2nd May came, Percy's due date. No baby, a mom of two but only one baby. It was such a hard concept to get my head around for a long time.

Uni gave me counselling which was great to be able to talk it through.

I used Percy's scan and made remembrance cards for our parents and siblings so they had a little piece of him too. I know it was harder him not being born and it seemed to help us all and i made a big one for us, that sits in the lounge. We purchased a boy angel for the garden so whenever we see it, we think of Percy but truth is he is always on my mind. And always will be. My second son who is his big brother's garden angel.
A robin visits our guardian regularly and sits at the window, i like to hope it is him. Telling us, he is ok.

December 2018 we welcomed another little boy into our family. And that pregnancy brought so much fear and joy and guilt too once we knew we were having another boy, i didn't want him to seem like a replacement.  every time we went to the hospital, i prayed not to be in that scan room or have that sonographer. I didn't want to see sad parents. I didn't want to see a black circle. Every scan i worried. Even when we had extras and we knew things were ok. We even ended up going in for spotting, extreme round ligament pain and reduced movements and on the outside I was calm but on the inside I was a wreck. To get to the labour ward, you pass those big white doors to theatre and they always make me stop for a second in a sense of dread before I can move on. We had the same consultant to make it easier as she knew the history. I didn't want to have her but I couldn't bear to explain it over and over. Luckily all was well and i have a bonny, smiley 4-month-old and cheeky 2 yr old to keep me incredibly busy.
The family mention Percy now, because we do and it has become normal. And that really helps us. He sits proudly on our side with pictures of the two pickles too. If my toddler asks we tell him who it is and he says ok and carries on playing.
I am a mom of 3 boys and not a day goes by where I do not embrace that! I no longer need medication for depression and I am doing ok as is our family. But the loss never leaves you. And it shouldn't. You just have to find a way that is right for all of you to cope. It gets lighter in the end.
Sending love to all the moms out there with angels. Xxxx