Zane was born today, twelve years ago, and lived for 36 hours before dying in our arms.
I wrote this story as soon as I could after being discharged from the hospital, and I wanted to share it with everyone who has been kind enough to show us support in sharing and signing our petition. It is a long and possibly difficult read, but people need to know that the deaths of these babies aren’t some abstract statistic, and the effects of going through this experience are more far reaching and long lasting than anyone can imagine.
We are Vasa Praevia.
On Saturday evening (14 October 2006) I went to bed as usual, hopeful that the membrane sweep I was given the previous day was going to work. I was restless and excited and during the early hours of the morning I woke several times to go to the toilet and was having contractions, but they were not painful and so I went back to sleep. At about 7.30am I woke up and felt a trickle down below. When I felt and looked at my hand there was blood. Surprised by this, I tried to sit up, but had to ask Scott to bring me a towel to protect our sheets. I hobbled to the toilet where I had a gush of blood. I was young and this was my first pregnancy, so even though the sheer amount of blood made me nervous, I assumed this was my waters breaking with perhaps a bloody show. I called the hospital and made arrangements to go in to the labour ward.
I sat on a towel for the journey to the hospital and although I was worried about the blood and the atmosphere in the car was tense, I was also excited because this was the moment we had been waiting for, this was the beginning of the birth story that I would excitedly recall for years to come. I sent a few text messages to my friends telling them that it was happening.
When I got there the bleeding had stopped and I was hooked up to the monitor. I was told that the trace showed that baby was active and seemingly happy and although I was contracting labour was not imminent. That trace was lost at some point as it does not appear in my notes. It was decided that I should be kept in all day and that night for observation, just to be on the safe side. I was disappointed that I wouldn’t be seeing baby yet, but a midwife brightly told me that she thought I would be meeting my baby that day. I impatiently started counting down the hours, willing my body to start with bigger contractions.
The bleeding slowed down during that day and I went to sleep that night after being monitored throughout the day. I should mention here that during our debriefing appointment atfer we had lost Zane the consultant explained that their investigation had uncovered the fact that the monitoring machines had not been running at the correct speed while I was being monitored and this could have affected the results, giving false assurance.
I woke at 2.30am and reported a bleed to the midwife on duty who promptly hooked me up to the monitor again for a while. Baby seemed fine again and was moving well and the heartbeat was strong. After this reassurance I tried to go back to sleep, but I found that I couldn’t so I lay for a while reading and hoping to drop off. I started to notice that I felt wet again and realised that I was going to have another gush. To my eternal regret, I lay for a while wondering whether to call the nurse or just get up and spoil the sheets. After all I had been reassured that everything was still okay, despite the number of bleeds I’d been having.
I called for the nurse and explained to her that I wanted to get up, but knew that I was going to make a mess. She told me it didn’t matter about the mess and helped me stand, but as I did I had a massive bleed that went everywhere. When I saw the reactions of the midwives I started to feel very uneasy. A midwife tried to find baby’s heartbeat with a Sonicaid and could not. I started to worry more, but thought that perhaps she wasn’t very good at it and a few midwives were trying by this point. Then a lot more people came into the room and wheeled me on the bed to the labour ward. They took me straight away to a room where a doctor attempted to find the heartbeat with the Sonicaid again. When he couldn’t find it either I started to shake uncontrollably and I remember that I couldn’t stop my thighs shaking. I’m pretty sure this was the first time in my life that I had felt true fear. They tried to find the heartbeat with the pad from the monitor, but that wouldn’t pick it up either. After that they brought in an ultrasound scanning machine and after a lot of manipulation and what felt like a thousand years had passed, the doctor managed to find his heartbeat and showed it to me on the screen. I burst into tears.
They could then use the image to find his heartbeat with the monitor and hooked me up to that again. I could tell immediately that something wasn't right because where previously the heartbeat had been between 130 and 170 bpm, it was now hovering at about 60 to 70 bpm. At this point, though, I was just relieved that he was still alive.
A doctor examined me internally and because I was around 4cm dilated he broke my waters to bring on labour faster. Although I didn’t see what came out of me I will remember the look on his face until the day I die. He knew that was a grave mistake. He immediately told me that I would be going for a caesarean section, and that they would need to put me under general anaesthetic. I was glad that they were working quickly, but absolutely terrified. A lot of people were talking to me and telling me that things were going to move fast, but that it was for the best. I was asked to sign a consent form that I didn’t have time to read and pricked with loads of needles. They told me that Scott was on his way. When I was taken into the operating room I could feel them preparing my belly, but I wasn’t asleep yet. I panicked that I wasn’t going to be under when they cut me, but it wasn’t even five seconds after I smelled the gas that I was asleep.
Again, during our debriefing appointment after losing Zane, the consultant told us that there was no blood ready when Zane was delivered. There was a delay in getting him the vital transfusion that he needed.
Literally the next thing I knew I was waking up with something attached to my face that I didn’t like so I pulled it off. Then I noticed that I was in complete agony on my belly and the nurses explained how to use the morphine button. Unfortunately for a while, the morphine was not being delivered into me and instead was leaking onto the floor. It was only when Scott noticed that I was still clutching my stomach and still in a lot of pain he went to check the morphine and saw the puddle of it on the floor.
Most of that day is a complete blur. I remember Scott being there and both sets of our parents arriving. I also remember telling the midwives that I wanted to breastfeed, because I knew that I needed to get him to latch on pretty quickly after birth and there were a lot of pitying faces when I asked. I was being told that Zane was very poorly, but the morphine meant that nothing really sunk in. I eventually understood fully, but it didn’t seem to penetrate.
Zane had gone into shock due to the lack of oxygen and this meant that his organs weren’t functioning properly and his blood pressure was very low. He had also suffered seizures and as a result his brain was swollen.
I was wheeled on my bed to see him in special care and he was full of tubes and wires. Scott stroked his side and it tickled him so he kicked his legs up. Apart from the tubes I remember thinking that he didn’t seem so poorly if he was reacting to being tickled. If I could go back in time, I would have made sure I spent more time with him. This was when he was the most alive, and after this point it all went wrong so fast. I should have been there, but I wasn’t. I didn’t know.
The next day Scott went to find out how he was. I couldn’t go because I was still hooked up to drips and morphine. When he came back he explained that the consultant had advised him that Zane was very poorly indeed and his blood pressure had fallen in the night. I was anxious to be taken off the morphine so that I could go in a wheelchair to see him.
When we arrived at special care we were advised that they had contacted the Leeds travel team who were coming to transfer Zane to the special care baby unit at the LGI in Leeds. He needed a machine to help his kidneys because he wasn’t passing urine. He had, however done a big poo and they were cleaning this up when we arrived. We stayed with him for a while and Scott stroked him and spoke to him. I couldn’t get to him because I was in the wheelchair, but I watched him as the nurses worked on him. When the Leeds team arrived to take him we went back to my room to wait. As I was leaving I looked at Zane’s face and his eyes were open. They looked for me as I was wheeled out and I hope he saw me.
After a few hours we were transferred to Leeds and taken to see Zane in special care there. He was asleep, but everything seemed under control and we were hopeful. He had started to become swollen due to the drugs he had been given, but I still thought he was beautiful. We knew that he would most likely have some level of brain damage, but we had a renewed belief that he might pull through.
We had been back in our room for a short while and the midwife hurried into the room and rushed us back to special care because Zane had gone into cardiac arrest. We arrived to find he had been stabilised, but the consultant took us to one side and explained that although he had been brought round this time the chances were that he would have another cardiac arrest and that this was his way of saying that he’d had enough. The doctor suggested that perhaps it was fruitless to keep reviving him and so we agreed that if he went into cardiac arrest again that they should not attempt to bring him back around. After all he should not be made to suffer and we respected the consultant’s professional opinion.
We decided that Zane should be baptised and after contacting our parents to let them know that they should come straight away we were told that we should baptise immediately as his heart monitor was showing fluctuations. I don’t remember much of the baptism, but I remember that our sisters looked confused at first. After hushed conversation I saw it dawn on them.
When the baptism was finished both of our parents, my sister and Scott’s sister came to say goodbye and the consultant asked to see us again. He explained that Zane was only being kept alive by the machines and in his opinion the most ethical thing to do would be to withdraw care. His blood pressure was still dangerously low, his kidneys weren’t functioning and his heart had gone into arrest once and was fluctuating. Worst of all his brain had swollen due to seizures and there was no telling how much damage there would be if he survived. The bottom line was that he wouldn’t survive and that by continuing care we were only prolonging his suffering.
Scott and I decided that the kindest thing to do would be to withdraw care and cuddle Zane until he passed away. This is what we did. The first time I held my son was when they took him off life support so that he could die. Zane passed away in our arms not 36 hours after he was born.
I’d held myself together and kept my hopes up throughout all of that. Although not on a conscious level I’d not allowed myself to bond too much with Zane, and I think that maybe it was a sort of self-preservation. - apart from the fact that I couldn’t even get physically close. Unfortunately, when I finally got to hold him and examine his little face, and his hands and feet, it was too late. That ‘getting to know you’ phase I have since been fortunate enough to experience with my living newborn children was for me, at that time, happening while he was dying and after he had passed away.
Sitting in the special room reserved for us so that we could spend time with Zane, Scott and I cried together. We sat for hours, but we didn’t realise it was so long until our family had told us later. No amount of time would have been enough, and we knew that this was all we had. A nurse came and bathed and dressed Zane for me. I was asked if I would like to help, but unfortunately, I felt I couldn’t do it. Looking back, I wished I would have. I still remember the nurse talking softly to Zane as she worked to clean him up, just as if he had still been alive.
When she passed him to me all dressed in his going home outfit he looked just like he had gone to sleep, except for the stillness of him. I have held many babies since I held Zane, but I will not ever forget his distinct weight in my arms. I sat with him and cradled him, trying to make sure that I remembered every detail of his face.
Eventually a nurse came back to me and gently said that it was time. I knew what she meant, they were taking him to the mortuary. I told her that she would have to take him from me, because I knew that I would not be able to freely pass him over to her. She was so kind.
We went home and organised his funeral. We chose a small white coffin and Scott picked Bright Eyes “First Day of my Life” for his song. The service was small and his ashes were scattered at York Crematorium in the gardens, but we chose not to have a headstone. We keep him with us always anyway, as he was a part of us.
This was 12 years ago. If the estimates given in the RCOG green top guideline are correct, then there have been at least 1800 more stories like this since then. ONE THOUSAND, EIGHT HUNDRED. And by their own admission, probably more. How many more of us need to go through this, and live with this before they DO something. Will they ever?
Please, please help by sharing this petition far and wide so that everybody learns what's happening and will continue to happen unless we get loud enough.