Updated: Oct 13, 2018
Baby Loss Awareness Week has really kick started something inside of me. I feel even more empowered now to talk about the details around Pippa’s death and baby loss in general.
In the last blog post Hannah wrote about the day we were told Pippa wasn’t going to survive. Whilst that news is obviously the worst news a parent can have, the feelings and emotions we had were going to get worse. On 28th December we had to absorb the news that her life was coming to an end. We were given a couple of choices of what we’d like to happen next, move her to PICU and intubate her again where she’d be heavily sedated but have the same outcome, or move her to Martin House Children’s Hospice. I remember saying that I just wanted peace for her. She’d suffered enough, and I want her to go peacefully. The hospice was the best option for us.
We had no idea how much longer she could fight for, so I made some really difficult phone calls. I phoned my sister as she was closest – I told her to come straight away to be with Pippa, so she can say goodbye. My mum and her husband Peter live in Scarborough, they were next. They set off to Leeds straight away. My final phone call was to my Dad in San Francisco, and this was by far the hardest. My dad was in the army for 24 years and he’s the strongest man I know. I’d never see him cry or get upset. As I told him the devastating news, it was the first time I ever heard my Dad get upset – but he told me to stay strong for my girls, and he loved us all very much. The ward sister phoned the neonatal ward downstairs and told them the news. A few of the nurses that had cared and fought so hard for Pippa came to be with her and to say goodbye.
That whole evening I just wondered why this was happening. How has it come to this? Why so sudden? I guess I was looking for someone to blame, but the truth was, no one was to blame. Pippa had just become too tired. Her tiny little body had fought too long and too hard to go on any further.
So what do you do when you know nothing can be done? Her fight is over. There’s nothing anyone can do or say to help her. Our world was crumbling and there was nothing we could do. There was a sense of calmness in the room, it was very quiet, no one was talking. The ward had arranged for Pippa to be in a much larger room, so we had the space for more visitors to be with her. Everyone took it in turns to stand by her side, stroking her hair, holding her hands, or just staring at her beautiful face.
That night Pip’s sats were all over the place. Alarms pinging every few minutes and each time us expecting that this was the end. A few of the family went home, while a few stayed overnight with us – none of us really managing to get any sleep. I can remember lying on my back all night staring at her monitor, watching every little heart beat and her oxygen saturation. Each time an alarm went off, I’d spring up and be stood beside her trying to keep her calm.
As the sun rose I think we’d come to accept the fact that we were about to lose our little girl. Someone from the palliative care team at Martin House came to see us that morning to talk about what they did there, and the care Pippa and us a family would receive. Up until this point, Hannah and I hadn’t had much outside help in terms of counselling. But we knew that we would need help moving forward, as would Evelyn – this is something Martin House would offer us. She told us she would arrange the transfer and we’d hear from her again later that day.
As the day went on, we were all just numb. Hannah was silent and it broke my heart seeing her like this. I made a phone call and arranged for Hannah’s friend to come to the hospital. I’d jumped back in to the “making sure everyone else is ok” mode. If anyone could bring a smile to Hannah’s face, it was Claire. In the afternoon a consultant from LGI who also worked for Martin House came to see us. She explained to us about the transfer and what would happen once we got to the house. Pippa’s oxygen support wasn’t available at the house – so once we were there, her support would have to be withdrawn. Her high-flow was the only thing keeping her alive. At that moment, it felt like I’d been hit by a train – the realisation that Pippa was going to die tomorrow. It felt strange knowing that her time was pre-determined. But in a way, it gave us time to prepare ourselves a little. I asked the question “How long will she have?” after her support was withdrawn and the obvious answer was that no one could tell. At this time the support she had was as high as it had every been. I suggested we weaned her down to see how quickly her body would react, and we also requested that they upped her dose of diuretic so more of the excess fluid in her body could go before we took her to the hospice; all the medication she was being pumped full of, made her body swell – she was unrecognisable, her eyes were swollen shut, we wanted her to look like Pippa. So her oxygen was turned down and her body reacted, although it wasn’t a sudden drop it was obvious she wasn’t handling it well and wouldn’t survive too long. Her dose was increased on her diuretic, this would take some time for us to see a difference, but it was worth a go.
As the night drew in, everyone left the hospital to let Hannah and I spend our last night with Pippa alone. I went home briefly with my sister to get some fresh clothes for us because we had no idea when we’d be home next. I made another phone call to my Dad and explained what had happened today and what was going to happen tomorrow – I had a full-on breakdown in the car, away from everyone but my sister, this was what being heartbroken really felt like. I didn’t sleep a wink that night. I stood next to Pippa all night, staring at her, giving her kisses, letting her know how sorry we were that it had to come to this. I told her how much I love her and how proud I was of her.
As the hours passed, the diuretic was working. Pippa’s eyes began to open, those big beautiful eyes staring straight back at me. She was quite settled so I asked the nurse if she’d help me get her out of her bed and on to my lap. Pippa had cannulas and wires everywhere and just the slightest of nicks would make her bleed heavily, so we had to be very careful. I sat with her on my lap for what felt like hours – relaxed and most importantly, peaceful. Hannah managed to get some rest, but I didn’t want her to miss this opportunity. I woke her up and traded places, so she too could look in to Pippa’s eyes and have some peace with her. Thoughts started racing through my mind. She was settled, she was awake, her sats were all fine. Was she turning a corner? Have the doctors got this wrong? What if…? As the morning came and the nurses changed over, I remember Hannah standing beside Pippa. She was having the same thoughts. We both stood together looking at her, deep down knowing that the doctors were right. I said to Hannah that today was going to be the hardest day of our lives – and that we’d get through it together. Pippa showed so much strength to us, it was now our time to be strong for her.
A little while later, Pippa became unsettled, thrashing her arms about so much a cannula in her hand came out. I was just coming out of the toilet where Hannah shouted “Ian she’s bleeding!” I didn’t have any shoes on, so me trying to run to the bed was like something out of a cartoon – I was running on the spot not getting anywhere. I got to the bed and just saw a huge pool of blood forming around Pippa. The nurse came running in, grabbing the gauze from Pippa’s drawer and there just wasn’t enough. She asked me to shout for another nurse and to bring “lots of gauze”. It took a while to stop her bleeding – the bed was soaked, her clothes and blankets ruined. That was it, that was the signal – this is the right thing to do.
Next up for us this morning was telling Evelyn what was happening. We hadn’t seen or spoke to her for 48 hours. We went to Hannah’s parents where she’d been staying and told her we were taking Pippa to a special house and all the family were going to be there too. We explained that we had to say goodbye to Pippa because the doctors can’t make her better now. I had her on my knee while Hannah was talking to her, and I broke down. Evelyn turned to me and told me my face was leaking, and she was right. She leant in and cuddled me, my 4 year old girl was looking after her Dad. We were in a rush because the ambulance to pick Pippa up was due, so I headed back to the hospital and everyone else went to Martin House to wait for us.
As I got to the hospital, the nurse who had been caring for her had gone downstairs to get her something new to wear – we’d packed up all of her things, so she had nothing else to wear after she was covered in blood, just what we’d bought her to wear after she had died. She looked beautiful. The ambulance crew were due any minute, so I spent my last few minutes alone with her sat next to her – telling her how sorry I was we couldn’t protect her, how much I love her, how much everyone loves her and that everything was going to be ok, I’ll make sure it’s ok. The ambulance came and set up her travel incubator – and off we went. The whole journey was a bit of a blur, people trying to make some conversation, but I just couldn’t focus. All I was thinking was that I wanted everyone at the house to have to opportunity to hold Pippa one last time before her breathing support was taken away, so they could have a few moments of peace with her.
The last 48 hours were confusing and difficult. Life had dealt Pippa such a cruel and unfair hand. Part of me wished she hadn’t fought as long as she did, so she didn’t have to suffer for so long. She didn’t deserve to suffer, she deserved to be here with her twin sister, Penny.