Saturday, 13 October 2018

BLAW 2018 - Tilly.

Today my friend, Charlotte, is sharing her special little girl, Tilly. Thank you so much Charlotte for telling Tilly's story, I feel honoured to be able to share it. 
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Thank you to Katie for giving me the opportunity to tell Tilly’s story on your beautiful blog. 


On the 29thDecember 2017 I saw those 2 pink lines on not one, not two, but three pregnancy tests. I couldn’t really believe it. Deep down I don’t think I ever thought that it would happen for me. It was such early days yet my brain could not help but begin to plan; to get excited about this new little life growing inside of me.
Fast forward to the 19thweek of my pregnancy through lots of morning sickness and other pregnancy related ailments. Ian and I went on a short break to Granada before the baby arrived; our last holiday with just us two. On the way to the airport we stopped in Manchester and ordered a pram and a car seat, it was perfect. I pretty much wished this holiday away because I knew that when we arrived home it was time for our 20 week scan and of course, time to find out the gender of our little one. I was so excited. I was so naive.
On the morning of the 20 week scan I baked a cake to take round to my in-law’s; I planned on filling it with either pink or blue smarties once we had found out the gender. The cake was never completed and still to this day I struggle to go down the baking aisle of the supermarket, almost like it’s a reminder of my naivety.
I lay on the bed in the scanning room, my heart thumping. Within seconds of having the cold gel on my tummy she asked if I had felt my waters break or felt any fluid leaking. I hadn't. She explained to me that there was barely any fluid around the baby. I felt sick. Feelings of absolute dread and anguish washed over me. She then said that she couldn't make out all of the organs due to the lack of fluid so I was asked to go and sit back in the waiting room and allow my bladder to fill up. I sat there wishing and praying that everything was okay. We were called back in and she soon found the kidneys and bladder that she had been looking for. They were all fine. I started to relax a little and even managed to give Ian a little smile. She continued to move the scanner around my tummy, reading out numbers to her colleague. She then fell silent for an uncomfortable period as she pushed the scan probe harder into my tummy to get a better view. She hadn't told us the gender. She put her probe down and I knew it was bad news. "There's something there but I don't know what it is, I've never seen it before and I can't tell if it’s attached to the placenta or the baby".  We didn't know what was wrong, we just knew it wasn't good. We were then directed into a different room, one with comfy seats and a coffee machine and it dawned on me that we were in the "bad news room". I barely remember walking back to the car that day. We were numb, our world had begun to shatter. I got home to my half finished cake and sobbed.
After two very long days of replying to text messages from well-wishing friends who had been excitedly asking us about the sex of our baby, we travelled up to Newcastle where we met Professor Robson, a fetal medicine expert. We sat for hours in the ‘counselling room’ and when our turn for a scan eventually came I genuinely believed that everything would be fine. I had so much hope. At this point I never imagined for one second that my baby was going to die.
We were seated back in the 'counselling room' and shortly afterwards, the Prof came in and joined us. He sat down and looked at us over his glasses and said the words that will stick in my mind forever, the words that made our hearts shatter; "this baby has a major abnormality". I was in complete shock. I went numb and felt like a fly on the wall watching the horror unfold. He carried on talking but it was like I couldn't hear him properly, like there was a white noise or a fog that wouldn't allow what he was saying to reach my brain. He told us that our baby had a sacrococcygeal teratoma; a fast growing tumour attached to the sacrum. He said that my baby was 1 in 40,000. The bad news continued to flood in; we were told that she had a very poor prognosis and that continuing with the pregnancy would put me at too much risk. We were told that she would probably develop hydrops fetalis (fluid around the organs which results in heart failure) and die in utero. He said there was a possibility of me developing Mirror Syndrome which is basically a mimic response where my body develops heart failure too. He went onto say that if I did get to a point of delivery which could have been anytime after 32 weeks then I would have to have a classic c-section which involves a horizontal and vertical incision of the uterus therefore putting future pregnancies at risk too. He added that continuing to a point of having a c-section was a major risk which could result in me and the baby haemorrhaging severely due to the size of the tumour. And even once she was over all of these hurdles, she would have to endure hours and hours of extensive surgery to remove the tumour and still might not pull through. I felt like our world had just stopped.
We were then given 2 options: to terminate the pregnancy or to have an MRI scan to confirm the diagnosis followed by a consultation with a paediatric surgeon. We chose the latter. 

We travelled home and began a week of what felt like mourning. We were grieving for a baby that was still alive. The more we talked about it the more it came apparent that Ian was not willing for my life to be put at risk and we felt we had no other option but to terminate. So we lived a week of thinking we were going to have to end the life of our precious, much wanted baby.

A week later on my 29th Birthday, now 22 weeks pregnant, we travelled back up to Newcastle truly believing we were in store for a day's counselling about having a termination.  We met a paediatric surgeon however who told us that if we managed to make it to 32 weeks and he was handed a "healthy" baby then actually she would have a good prognosis and would go on to lead a normal life. We were told he would operate on her 2 weeks after birth and that although the surgery would be extensive, she would probably fully recover. We finally had a glimmer of hope. This was the best news we could have hoped for on my birthday.
Of course the risks Professor Robson had already told us about were still there but hearing such positivity from the paediatric surgeon made all of those risks worth it. We then decided to continue with the pregnancy and I again let myself believe that I may actually have a baby to take home at the end of all of this.

I'm not sure how the Prof felt about our decision, whether he thought we were foolish maybe, but he supported us anyway. He reiterated to us that he didn't think she would survive the next few weeks and that basically the odds were stacked against us. He told me that with a normal pregnancy, baby's can be born at 24 weeks and have a decent chance of survival but my baby wasn't normal and this was therefore pushed back to 28 weeks. We had to get to 28 weeks to give this baby any chance of survival. I was then scheduled for weekly ultrasounds to check for hydrops, heart failure and to see how quickly the tumour was growing.
So every week we lived for the following Friday, in absolute limbo. Every week we sat in that waiting room with the other expectant mums waiting for our scan to see if our baby was still alive. And every week she was. With barely any amniotic fluid around her, her organs were still developing and she was still growing perfectly. She was fighting away in there despite everything she was up against. Our little warrior.

Friday the 18th May came and I was now exactly 24 weeks pregnant. I'd had my scan that morning at around 9:00 and again, everything was stable. I felt so proud of her, so proud to be the mummy of this strong little human. We text our families the good news and they replied with relieved messages. Every week that passed was another hurdle that we had all overcome. Within half an hour of arriving home from the scan I noticed that I was leaking pink fluid. I phoned the community midwives and was asked to attend the delivery suite. I began to think that it was all a bit of an overreaction, it was just a little bit of fluid, nothing major.

When we arrived, all I could think was why was I here? This was for where women gave birth to their babies. My baby couldn't come now. She was only 24 weeks. I'd had it drummed into my skull that my baby wasn't viable until at least 28 weeks and that there was zero percent chance of survival if she was born now. The dread and the anguish that had become so familiar began to wash over me again as I felt the reality of the situation hit. The Registrar came in and my worst fears were confirmed; at only 24 weeks, my waters had broken. I knew how bad this was. I cried tears like I've never cried before, tears of overwhelming sorrow. A couple of hours later, I was transferred up to Newcastle.

Throughout the night I was seen by numerous different midwives and doctors. It was reiterated to me that there was no chance of my baby surviving if I was to go into labour now and the likelihood was that this would happen within the next 48-72 hours.  In the middle of the night a neonatal Dr arrived to see me. His arrival was a bit of a surprise considering the last Dr's opinion was that my baby had no chance of survival. We talked about what the other Drs had said and then he said to me "but what if your baby does survive?" After being told by some very senior fetal medicine Drs that this wasn't a possibility, I looked at him confused. He said that the current plan wasn't even giving my baby a chance, so he asked me "what do you want us to do if your baby is born and she is alive?" I said "I want you to try and save her". 

72 hours passed and I hadn't gone into labour. She was hanging on in there. Everybody began to relax. They now said that the chances of going into labour were getting less and less. I was told stories about ladies that had managed to get to over 30 weeks, some even full term. The day after I was admitted I was told that I would be an inpatient for the forseeable, basically until my baby was born. It's a strange feeling; wishing to stay in hospital for as long as possible, but I knew that the longer I was there, the more chance my baby had of surviving. So I pretty much made myself at home. 

On the evening of the 25thMay, a discomfort in my abdomen that I had been aware of all day began to worsen and I could hardly bear to sit down. The pain was worsening by the second and my bump now began to feel like it was on fire. I had never felt pain like it.

The next thing I remember was a Dr telling me that they suspected sepsis, which I later found out stemmed from me developing chorioamnionitis (an infection of the womb). She also said that I was 1cm dilated. She told me that this was it now - my baby had to be born by classic c-section (an inverted T incision of the uterus). The next person to enter the room was the anaesthetist. She talked at me about epidurals and general anaesthetics but I couldn't take in what she was saying. I told her that I didn't want to be awake and she agreed that because of the infection, a general anaesthetic was the safest option.

At about 11pm I was transferred. I remember passing a new mum cradling her baby as I was wheeled onto the delivery suite. I knew that wasn't going to be me, I knew I wouldn’t come out of here cradling a crying baby.

I remember feeling awful for not ringing my Mum to tell her what was happening but I couldn't bear to wake her up at midnight. If she was asleep she was oblivious to all of this and that to be honest felt like the kindest thing to do. An influx of Drs and midwives ensued. More bloods were taken and another cannula was inserted into my hand. Intravenous antibiotics and fluids were pushed through my veins. The Dr that was to perform the c-section came in and went through the consent form with me. I recall her telling me that if it didn't go to plan and there was difficulty getting my baby and the tumour out, my womb could become damaged and a hysterectomy would be the only option. I was absolutely petrified. The neonatal consultant arrived and told me that his team were ready to go into theatre to try and save my baby. He told me that if she couldn't be saved then she would be for "comfort care" and that she would be placed in my arms. It was at this moment that I realised I may never get to see my little girl alive. Everyone else in that theatre would get to see her apart from me because I would be under a general anaesthetic. The next person to enter the room was a consultant anaesthetist, someone who I will be eternally grateful for seeing that night. I told him I wanted to be awake to meet my little girl and he said that although a general anaesthetic is what they usually do in cases of infection, in my case a spinal would be the right thing to do.

So off I went, into theatre. Ian told me later that day that there were 16 members of staff in theatre that night. 16 people with different specialities and different skills, all with one thing in mind; saving me and my precious little girl. With Ian holding my hand on one side and the anaesthetist reassuring me on the other, at 00:56 on the 26th May 2018, we welcomed our first born, Tilly, to the world.

She was whisked away to the neonatal team in the corner of the room immediately but after only a few minutes the Dr came over and told Ian and I that they weren't going to be able to save her. She was brought over to me wrapped in blankets and placed on my chest. She was moving her little head and I could feel her breath on my cheek. She was the most beautiful little life I had ever seen and I felt so proud to be her mum.  She lived for just 34 minutes before passing away peacefully. It may sound strange to say that I feel lucky but I do, I feel lucky for every single one of those minutes that Ian and I got to spend with her. 

When I read Tilly’s story back to myself, I can’t believe these are my words. I still struggle to comprehend that this has happened to me. Losing a baby irreversibly changes you and you feel as though your life has been split into 2; the before and after. You struggle to comprehend how you will ever get through each day, each week, each month but 20 weeks on I am still here and I am still going. I can’t say that it has got easier because for me, the heartache still feels just as raw. What I can say though is that I am learning to carry my grief in a way that doesn’t debilitate me. I can laugh without feeling guilty and I can allow myself to look forward to the future. I take great comfort in knowing that Tilly will never be forgotten and that her memory will live on through her dad and me.


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Thank you so much Charlotte for sharing yours and beautiful Tilly's story during Baby Loss Awareness week. 

Katie xx
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