# 21 The most hardest and longest blog yet...

On Tuesday 23rd March, we were still not agreeing on a decision that was best for our son. So we travelled back to Liverpool to have another scan. After finally getting our diagnosis, nearly 12 weeks of waiting, we were now looking at a scan of a baby with a KAT6B mutation, SBBYSS. Our baby. There he was, strong heartbeat, chilling out and pressing on my bladder. The consultant sat us down to remind us of all the options that could happen. It really hit home when we were told that our beautiful boy is highly likely to not be able to communicate with us and unable to let us know of his pain. We knew we didn’t want our selfishness of sheer ‘want’ to have our baby cause a human being to be in constant pain. There and then the decision was made. We would stop the pregnancy. We both felt like shit, and that’s putting it lightly!! I sat with my hands on my stomach feeling a protective mother of a baby i knew was going to die. I wanted them to put a needle into my heart too! We were given 2 days as options. Thursday or the following Monday. Thursday seemed far too soon to me, but easier to my husband. My husband respected my wishes though of wanting this extra time with our son a little longer, wanting to treasure every moment and movement, as we never know if we'll ever be able to experience this again. Monday 29th March was booked in to stop our poor baby’s heart. It was also arranged to go straight to our local hospital afterwards as I didn’t want to come home with our dead baby inside of me, even though we knew it would take a couple of days to go into labour, they were kind enough to agree.

We were still trying to get our heads around if we were doing the right thing. I’m not exaggerating when I say, it’s ALL we could think about. If our hearts ruled our heads, we would have rung the hospital a million times! On Wednesday 24th, I cried so much I was practically retching. How could we create a baby and kill him!?!?! That was the last day I actually felt our baby boy wriggle.

Thursday morning, there was a churning in my lower stomach and that was the last sensation I felt inside. In the evening we watched a friend on TV score for England. Even the celebration didn’t have our boy moving. That night in bed, mother’s intuition had me in turmoil. All night I kept holding my stomach praying for him to move, but he didn’t. On Friday 26th at stupid o’clock in the morning I was up and packing a hospital bag, my husband looked at me with the look in his eyes I know too well, “she’s losing her marbles again”. I kept sitting down and begging my husband to feel our baby move. Neither of us could. My husband was keeping extremely calm and keeping me cool, but I knew. I knew something was wrong. After a few hours of the morning I rang the hospital and they told us to head straight over. We were asked if we wanted the screen on, but neither of us could speak. The screen was left on, my husband was staring at it, I was like a nodding Churchill dog, looking between the screen and the ceiling. There he was, our baby boy, lying completely still and that beautiful heart we’ve watched so proudly over the weeks was no longer visible to us. It was no longer beating. He was sleeping forever. The midwife soon got out of her seat from beside the sonographer and was by our side within seconds, but I said the words for her “he’s gone”. Inside I was screaming but on the outside I was numb. We were left to gather our thoughts, but I couldn’t tell you what my husband and I did or said. In fact, I don’t remember much for the next hour or so. Midwives and consultants all came to see us and told us how strong our baby was and that they don’t know how he lasted as long as he did. He was such a fighter! They kept telling us that he had taken our painful decision away from us and made the decision for himself. I sat there in tears, telling them it was my fault, my pure heartache killed him. My grief of knowing what we had to do put too much strain on my body and his little body couldn’t take it. That’s all I kept thinking. Everyone assured me that this wasn’t true and my husband told me never to say it or think it again. All plans that were put in place not even half a week ago were changed in the blink of an eye. Our world was ripped apart sooner than I had prepared myself for. I was given a tablet that would start my insides for the labour and had to go home as they didn’t have our room available yet and I didn’t want to be in the tick of the labour rooms, with the lucky women that would be getting their babies alive and happy. We arranged that after our baby would be born we would get over to the children’s hospice and spend our quality time with our sleeping baby there instead.

I think I managed to get 3 hours of sleep that Friday night. I was awake at 2.30am and got out of bed at 4.30am as I couldn’t listen to the thoughts in my head any longer. Looking back now, this was my coping mechanism starting. I did some chores around the house and made some pancake batter, watched TV and then prepared breakfast. I knew we were not going to be here on Sunday and it’s our family thing on Sundays to have pancakes, us and the dog. I got showered, put some makeup on and straightened my hair for the first time in months. The hardest part was knowing that my little pride and joy inside of me was know longer alive. Walking around holding a bump I still felt so protective of, wishing to feel him kick again. When I would come home again, a part of me will be missing, forever. But, It was time to go. Deep breath and brave face on.

At 10am Saturday 27th March, we arrived at the room that would completely change our world. A midwife welcomed us and told us once more what would happen (with us actually taking it all in this time). We would be offered 4 tablets every 6 hours to start our labour. If after those were not to work, we would have to wait 12 hours and start the process all over again. 11.15am my first tablet was inserted into my cervix. My husband's strength and our humour got us through. We snacked and chatted, watched TV and chatted some more. We did everything we could as a team to get us through. There were some strange movements happening inside my stomach. (I even doubted at one moment if our baby wasn’t still fighting. Stupid I know). At 5.15pm my second tablet was inserted and I asked for paracetamol as there were some strange sensations starting. After this my stomach moved, like something from the film Alien! The whole shape changed. It no longer felt like a baby bump, now it was a lump. I found this highly distressing. My special bump I treasured so much was scaring me, it looked like something out of a horror movie rather than the beauty of a baby boy arriving. By 6.30pm contractions were well and truly kicking in and I (to the relief of my husband, stopped being stubborn) needed something stronger, I was given a diamorph...’Ahhh.’ By 10 o’clock everything was becoming far too much! I was trying to push out my dead baby. A baby I would never hear cry, never see his eyes. Never feel his heartbeat. Why did we have to go through this pain still!?! My husband asked if I could have any more pain relief which I was arguing I didn’t, but she came back with some anyway as I was clearly not ok, with an anti sickness as I was also feeling extremely nauseous. (It never took effect though, it was too late. I was in the height of labour). I was given gas and air and my husband can tell you the rest of the story much better than me now...we have giggled over our different versions of events since. I told him how amazing he was and how lying on my side staring into his eyes is what got me through. He will tell you that my eyes were rolling around my head and that I needed help guiding the gas and air into my mouth. All I know is that something changed for us that night, our lives were ruined forever but our life as a team only got stronger.

The midwife would every now and then tell me “you’re doing great” which my response was “you're supposed to say that”, making my husband laugh. I asked if she could break my water for me, as I was clearly not, which was a huge relief when she did. After that, I kept asking if anything was happening and she said “I will call someone else in to help me deliver your baby”. When I was frantically sucking on the gas and air she told me “your nearly there” which I responded “no I’m not, the other lady isn’t here yet”...according to my husband, she didn’t understand what i meant and thought I was off my head, but my hubby had to explain to her ‘I remember everything’. That was the start of the bond with myself and my midwife. She laughed and knew the person she was now dealing with!

My husband has been forced (by me) over the years to sit and watch the odd episode of ‘one born every minute’. He’s always said that if ever it was to happen for us, he would never be at the bottom end...he wanted to stay at the top end, holding my hand. The midwife set the alarm that my baby was coming and my husband was telling me he could see his head. This made me so very proud. He wasn’t a man watching a tv show, he was a father and a husband being the strongest he possibly could be for us. Our baby’s head felt like it was stuck and I feared I couldn’t push anymore, but looking into my husbands eyes (lovingly or off my tits, depending on whose story you want to believe) with another couple of pushes of all my heart and soul, our baby boy came gushing out at 11.10pm. ‘Billy Zander Nickless’.

Now, I was expecting to break down into tears. But somehow, it was just sheer joy and relief that was all I could feel. I was passed my beautiful baby boy Billy to hold, whilst my wonderful husband agreed to cut the cord. There in my arms, was my bestestestest ever friend. My hero. My world. My meaning. My little man. He just looked fast asleep. So peaceful. It was as if my brain hadn’t registered that he was gone. Now resting skin to skin on my chest, my husband and my midwife have both told me since that it was beautiful to see me with my baby. That it looked so perfect rather than sad. I was looking at my baby that I’d made so many plans for in my head. Dreaming of our life we should’ve had together. My heart knew he was sleeping forever, but it was as if a humanity switch inside of me was turned off. I just felt emotionless. My husband likes to remind me that after kissing Billy on the head, I inhaled him in and said “my fanny smells alright”. Now I’m sure you will agree, that’s never a sentence you'd say when you have your precious, sweet, angelic, much wanted forever sleeping baby in your arms! I’m convinced the medication or shock meant that my normal (I can cry at tv adverts) emotional state was affected by this trauma you never think will happen to you! And I really hope it never happens to you!!!

Because of the rarity of our baby’s condition, the doctor and midwife were extremely intrigued by him. As with stillbirth deaths they had to study his abnormalities to be noted and written down for their paperwork. I sat on the edge of the bed watching, as they carefully moved him around on the weighing scales. My husband and I locked in an embrace and were in agreement that our baby would never have had a quality of life. His legs, I can’t even explain their problems. They would never have walked. They were barely even connected. He had many features of a baby with SBBYSS too. The midwife took his feet and hand prints for us, before she put him in a gorgeous knitted (what looked like a dolls) outfit. Our baby was 34.5 cm long and weighed 1lb 10oz at 25 weeks old. His lips were so pink and voluptuous, he looked so perfect, we couldn’t stop staring at him. They put him in a cold cot (basically an open topped fridge) and placed him between my bed and my husband's sofa bed. As I was getting cleaned up, I was extremely sick. This made me shake as I stood throwing up and pouring out blood from my bottom half. This was the first realisation of the reality of what just happened. 2am and beyond exhausted from only 3 hours sleep the night before, I soon hit the pillow.

I woke up at about 6am and sat upright with the memory of ‘I have a baby’. As I gazed over and touched him. His hand ice cold. His cheek soft and chilly. My brain still couldn’t register what had happened. I have no idea how long I sat there watching him, in awe of him, in love with him, and deep down wishing for him to move. That whole next day is another blur. All I know is that I was very aware that I knew my emotions were still switched off. We knew that Billy’s skin oedema (fluid under the skin) had always been picked up, but it wasn’t until now that we realised the severity of it. The beautiful baby that we met the night before was leaking. We were warned that mucus can pass out of the mouth but our beautiful baby boy was leaking out through his skin. He was like a giant blister that was slowly weeping. Causing his bedding sheet to have a wet mark ring around him. If this wasn’t your baby, I’m sure this experience would be extremely distressing to witness, but somehow as a parent you see past it a little and we got the blanket changed whenever it looked too much. Our sleeping son was starting to look unlike the boy we delivered. But we still couldn’t take our eyes off of him and saw his absolute perfection through the changes. We were supposed to be going to the hospice in Liverpool, but we knew we would not put his poor little body through that. We also knew that whilst we were handling his changes right now, we could not handle his changes in another couple of days time. We knew this was probably our only and last whole day with our son. We would not go to the hospice. My emotions were slowly starting to come back into effect by the time I watched in awe of my husband, sat over Billy’s cot telling him all about the legend ‘Harry Kane’ as he watched his first and last football match with his son.

It was torture hearing other woman down the corridor screaming like they were being murdered and hearing their babies cry. I kept hearing babies cry, even when there weren't babies crying! I was always relieved when my husband confirmed he could hear them too!

By that evening it was as if the world fell on top of me and it all came in one gigantic flood. That evening, 24 hours after the birth of my angel, my tears finally fell and they flowed and flowed. My husband and I hugged and cried in the tightest embrace ever as our hearts broke as one. We couldn’t even separate that night. We lied down beside our son together and held each other in a single hospital bed all night.

The next morning the mood was very different. There was no trying to lift each other up. We were just trying to cope. We had our memory box given to us from the hospital, donated from a family in a similar position (4 Louis). We had evidence of Billy’s death certificate. We just had to get our heads around leaving him. The hospital was incredible and told us that we could stay as long as we needed. A couple of consultants and midwives came to meet Billy as we have all been on this journey together. It meant a lot that they cared so much to say hello and goodbye. Now it was our turn. I’ve lost both my parents and I’ve always said that when I left them behind, it was horrific!...but, I don’t even have the word to explain the pain of leaving behind your child. That precious tiny baby that has relied on you to breathe. The life you created with your whole heart, soul and every ounce of love you have. The baby who needed you to provide him life. The thought of him being put in a body bag in a freezer still haunts me now.

I felt I could barely walk as a midwife led us out of the maternity ward corridors. I felt I couldn’t breathe as my crying almost led to a panic attack. Once out the maternity ward, the busy corridor was (in my eyes) filled with pregnant women. Once at the car someone had their baby ready to go home in a carry car seat. I remember screaming as I hugged my husband close to me and screamed “we need to go back”. It is so unnatural to give birth and come home empty with no baby to hold. I don’t know how my husband drove us home!

The legal phone calls started the day after we came home. We knew it wouldn’t be easy. It’s been unbearable. The heartache. Getting through each hour feels like an achievement. The loneliness is overwhelming. Messages of support have been so very comforting. But you soon forget the words when the heartache takes over again. My breasts have been my constant reminder. They are trying to feed a baby that is lying cold and lifeless. My body has no idea he’s died. The rock hard and hot breasts became too much when we first came home, the pain was excruciating, made only worse by the jerks from my breathing at my tears that were falling. Gradually they are leaking less and easing very slightly each day as too is the bleeding. My tiny bump is another reminder. I can’t bear to look in the mirror.

Everyone keeps telling me ‘I’ll always be Billy’s mum’, but when you’re childless and empty inside after going through this nightmare, I most definitely don’t feel like a mum. That failure feeling is back. Messages saying I can’t wait to give you a hug after lockdown hurts a little, I don’t want a hug in a few months. I need it now. I’ve just lost my miracle. It’s also been a sensitive subject that Billy has been compared to a miscarriage. Any loss is unbearably sad and no woman should experience it. But Billy wasn't a miscarriage. He was a stillbirth. He was a baby. I had to push out a 25 week old. Now we need to plan a funeral.

On Wednesday 31st March, it was confirmed that Billy’s funeral would take place on 9th April at 9.15am (irony that it’s the day my mum went into labour with me, she told me EVERY year!) I say funeral, but it’s a quick simple cremation. My anger at the stupidity that there’s a god watching over us and we should respect the pain he’s put us through meant that we chose a dignified and personal moment to remember Billy’s strength instead. We have planned for a single white rose on a blue coffin. Casper's lullaby will play as we arrive and leave. With the song ‘Fly’ by Celine Dion to be played as we sit and remember him. We are allowed 29 (27 including us) to Billy’s cremation. With the covid rules and the fact that our family and friends are scattered all over the place, meant that we have chosen for it to be just us. Our midwife has offered to be there for support which absolutely means the world. It’s been a tough choice of what to do. We obviously want people to be there but we don’t want to resent forever the people who said they couldn’t come (and I know I will). I can not thank all the team at Leighton Hospital fetal medicine and labour wards enough, they were absolutely amazing. The consultants at Liverpool women’s hospital. Kat and Paula at Claire House, in these last scary months before the diagnosis and attendance at any results/scans gave us so much support at a very lonely time!

I’m so relieved that when my angel baby was resting in my husband's arms before we said goodbye, my husband looked at me and told me “we have to try again“. I knew that I would want to, but I was convinced that my husband would never agree. We were the ‘unlucky ones’ as we kept being told with the diagnosis of our son. It’s so rare. We now need to look into the possibility of it happening again a little further. If we were to get our dream, they would be told every day of their big brother Billy who taught us the meaning of unconditional love. The fighter he was. The hero.

These blogs were meant to be the truth of IVF and not the rose tinted version. It was to give my honest story. It’s turned into a personal life event journey instead, something I never envisaged. We recently read back my first blog from 2 years ago. It was so sad to read my words full of hope knowing what we know now. Someone recently told my husband after reading them, that they would never do IVF (that being said, they have 2 children naturally). This was never my intention, I would NEVER put anyone off IVF. If you are desperate enough to be parents to a child you create with someone you love more than anything, even through all this heartache, we treasured 2 days with our little angel and felt love that we never knew existed, he was worth it. DO IT!!!