Monday, 15 October 2018

BLAW - Tate.

On the final day of Baby Loss Awareness Week, we have Sarah and Tate's story. Sarah shares her experience with a rare condition called Vasa Praevia. 

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It was finally here! My last day of work before starting maternity leave! It was Friday 16thOctober 2015. I was 36 weeks pregnant and oh how I had longed for this day for the past month. I’d had pretty impressive Braxton Hicks for a while now and for the past week was convinced I was losing my mucous plug, in fact, only the day before I had expressed my concerns about this to my midwife who just brushed it off as end of pregnancy incontinence (Oh the joys!).

My Baby Shower 11th October 2015

I’d hopped on the bus to go into work and as I sat down I felt a bit of a pop inside and something warm and wet between my legs ‘this is it’ I thought excitedly, my waters have gone! And on the bus! What a funny story to tell at the baby’s 18thbirthday party! I got my phone out and text my mum as I felt more fluid pool, both she and my partner Andy planned to be there at the birth, I thought I would wait until I got to work to give Andy a call, it would be fine and plus, I didn’t want to announce to the bus full of people that I thought my waters had just broken! I felt the baby move, but it was a soft kind of half-hearted attempt at a movement which made me feel uneasy. This wasn’t what his usual movements felt like. He was strong and packed one hell of a kick and I’d googled many times if baby kicks can give you internal bruising. Something was wrong. 
By the time I hurried off the bus I could feel more of what I thought were my waters trickling down my legs, luckily the bus stop is directly opposite my work place and I rushed into the building and got myself into the lift. I finally looked down. Big, large drops of fresh red blood were dripping down onto the floor and my bright green dress had turned crimson from the waist down. 
My pregnancy had been pretty text book, apart from a large bleed at the beginning which I had mistaken for my period. I had just come off my pill the month before so I didn’t know my cycles properly and just assumed I’d come on my period. It wasn’t until about 10 days later did I suddenly think to take a pregnancy test. I was doing our weekly shop fighting waves of heartburn and nausea and I just didn’t quite feel ‘right’. It was the first time I’d ever peed on a stick and I genuinely could not believe it when a strong second line appeared! I had no idea how far along I could be due to the large bleed and the strong test line and lack of proper periods to go by. A quick call to my GP and I was up at MAU a few days later having a scan. Suddenly I was looking at this tiny little flickering blob on a computer screen. I was 6 weeks and 4 days pregnant and the little blob had a heartbeat already. We were told it was a threatened miscarriage and the sonographer explained that she could see where the baby had tried to implant higher up in my womb but had bumped all the way down to the bottom which is what had caused the bleed. Somehow the little blob had managed to hold on though and going forward I had a relatively un-complicated pregnancy. 
We found out he was a boy quite early on. My local hospital a teaching hospital and a friend of mine told me about a study they were doing to look at the growth of babies. It basically meant that I got lots of extra scans (3D ones at that!) and they said if they were to ever find anything that might raise any concern they would refer me for the extra additional care that I or the baby would need. At 16 weeks my little man quite proudly showed off all his bits to a room full of people including my parents! We wanted to keep his sex a surprise for everyone so denied all knowledge of seeing a penis and instead claimed it was umbilical cord to keep everyone guessing! It was at this point that I knew his name would be Tate. 
At our 20 weeks scan I was told, just in passing that I had a low lying placenta but it was fine and that most of them move up and I would have another scan to confirm that it had moved at 32 weeks. The 32 week scan came around and it confirmed that my placenta had indeed managed to move. It was 2.5cm away from my cervix and all was well. Apart from the sonographer mentioning that my placenta was a bit odd looking and had something ‘dangling down’ at the side. She wasn’t at all concerned about this though and didn’t write anything on my notes about it either. All was fine, I was OK’d for a vaginal birth and the rest was just a waiting game! 
Back in the lift I started to panic, I got to my floor and ran down the corridor. No one was in yet, it was still early. I finally found a light on in an office and barged through the door screaming for help. Someone was there and I asked her to call an ambulance. The bleeding was getting worse and I was suddenly worried about the mess I was leaving on the floor. I knew that the disabled toilet was a wet room so I settled myself in there, slumped in the corner and tried to call Andy. No reply. I called him 40 times in the space of a few minutes, still no reply. I sat there and watched as blood pooled around me, there was nothing I could do to stop it, it came out in waves and gushes and was all around me. 
The paramedics arrived soon after the 999 call. They asked me lots of different questions, how far apart were my contractions (I wasn’t having any!), how bad was the pain (I wasn’t in any pain!) and when was the last time I had felt the baby move. It had been nearly half an hour since that last movement on the bus. I was still bleeding heavily and the paramedics were in the process of moving me onto a trolley when I finally got through to Andy and told him my mum was on the way to pick him up and that he needed to go home and get my maternity notes. 
My boss came with me to hospital. She listened to me saying ‘no, no, I’m sure I’ll be ok’ nodded her head and jumped in the back of the ambulance holding my hand. I’d never been in an ambulance before, let alone an ambulance racing through the streets with the blue lights on and sirens whirling. The Midwifes took one look under the blanket covering my bottom half at MAU and sent my directly to delivery suite. Everything happened so quickly, the on-call Consultant came swooping in with a portable ultrasound machine and detected a heartbeat of 150bpm almost straight away. The relief! My baby was OK! My joy was short lived. The Consultant had grave concerns, he could see that not enough blood was being pumped though my baby’s heart. It was then that he diagnosed a ruptured Vasa Praevia. The bleeding was not coming from me, it was coming from my baby and he was dying. He then told me that he would be delivering my baby immediately and went to prep for surgery. Andy and my mum still hadn’t arrived, and it was my boss, who called them to say I was being taken into theatre and the baby was coming. She was then given a hair net and robes and bundled into the operating theatre with me, she held my hand again, told me I was being so brave and watched as my son was born. 
It was 9.29am when they lifted him up over the sheet and said ‘congratulations, you have a son’ I couldn’t believe he was here! How quick was that? 17 minutes after I was told I’d be having a C Section I was a mother! Tate Stuart Woodman Taylor, born at 36 weeks 6lb 4oz. Stuart – My Dad’s name, I always knew if I ever had a son I would name him after my Dad. And Woodman – a family name given to the first born son in each generation of Andy’s family. Straight away I thought the baby looked a bit pale, in fact not just pale. He was white. And he wasn’t crying. He was taken over to the other side of the room and I couldn’t see what was happening. What I now know is the anaesthetist purposefully stood in the way so I didn’t have to see so many people working on my tiny little baby desperately trying to resuscitate him. In the midst of all the commotion, Andy was thrown into the operating theatre. They hadn’t really planned this and the entrance to the room was down at the ‘business end’ so unfortunately he saw them pulling out my placenta before being told not to look and ushered over to my head. 
11 long minutes passed before we finally heard a tiny little cry. Andy was then invited over to meet his son. I got to see a glimpse of him and touch him before they whisked him off to NICU. 
Meeting Tate

During the following hours and days I was in an utter state of shock. What had actually just happened to us? To my son and would he be ok? That was a question that no one currently knew the answer to. Tate received 2 full blood transfusions in theatre after he was resuscitated and even more blood once he got to NICU he was currently being cooled to try and prevent any brain damage. This is when I learnt all about Vasa Praevia, a condition that I had never heard of but that had just changed my life.  
Vasa Praevia (or Vasa Previa) is a rare obstetric condition which affects about 1 in 2,500 pregnancies (or 1 in every 300 IVF pregnancies). It occurs when fetal blood vessel(s) from the placenta or umbilical cord cross the entrance to the birth canal, beneath the baby. Vasa praevia can result in rapid fetal haemorrhage which can occur from the vessels tearing when the cervix dilates or membranes rupture. If the condition is not diagnosed prenatally, the fetal mortality rate is estimated to be 95%. In cases diagnosed prenatally and correctly managed the infant survival rate is 100%. Diagnosis of Vasa Praevia is made by ultrasound using colour Doppler. Vasa Praevia can be detected during pregnancy with use of transvaginal sonography in combination with colour Doppler.  Infant death from Vasa Praevia is fully preventable if diagnosed prenatally. Vasa Praevia is not currently routinely screened for as part of the anomaly scan on the NHS. In fact the latest guidelines released by the Royal College of Obstetricians and Gynaecologists (RCOG) in September 2018 state the following “…based on an 80% detection rate, the 2014 UK NSC external review found that the targeted screening of all twins and singleton pregnancies with at least one high-risk factor could reduce the perinatal loss rate by as many as 150 cases per year.” It then goes on to say "Although targeted mid-pregnancy ultrasound screening of pregnancies at higher risk of Vasa Praevia may reduce perinatal loss, the balance of benefit versus harm remains undetermined and further research in this area is required." I’m not quite sure what ‘harm’ the RCOG refer to, but what is clear is that if this condition was routinely screened for hundreds of healthy babies’ lives could be saved each year. A recent poll of over 1,000 people by ‘Vasa Praevia raising awareness’ showed that 99% off the people that participated would want to know if Vasa Praevia was suspected at the mid-pregnancy anomaly scan. There are two different types of Vasa Praevia as illustrated in the below diagrams. I had Type 1 Vasa Praevia. 

The only risk factor I had for Vasa Praevia was my low lying placenta. I now know that the bit ‘dangling down’ at the side that the sonographer mentioned at my 32 week scan was in fact exposed fetal vessels.

Over the following days not only did we learn more about Vasa Praevia, we also learnt more about Neonatal Intensive Care or NICU. Tate was connected to an array of different machines and was monitored daily by 2 nurses at all times. He was by far the sickest baby in the unit and a Registrar would always loiter around his cot after the head Consultant had done his morning rounds. They didn’t know how long Tate had been without blood or oxygen and at this point, we just had to see what happened after the cooling process when they warmed him back up. They told us that he had a strong Heart and strong Lungs and we held onto those little nuggets of information like beacons of hope.   



Tate lived for 5 precious days in NICU. I always like to tell people that he lived for those 5 days, not that ‘he died after 5 days’ they were the hardest days of our lives but part of me looks back on them with so much joy, it sounds odd I know, but that was my first experience of motherhood and I want to be able to remember Tate for the light that he bought into our lives. He battled through those days, and so did we. Always trying to find a positive out of a sea of negatives. Sometimes it was hard to see past the breathing tubes, the electrodes coming out of his head monitoring his brain activity, the multiple wires coming out of his arms, the cannulas’ and the picc-lines. By the end he was on full life support, but occasionally he would take a breath for himself and it was for those moments that we were hanging on for and fighting for. On day 4 Tate got to travel to the other side of the hospital in what I liked to call a little space ship for an MRI scan. I was so pleased he got to do that little trip, surrounded by a crash team and ‘Mr Snuggles’ his comforter, he got to see the ‘outside’. 

Tate's "Spaceship"
The MRI revealed the news that we hoped we would never hear. Tate had no brain activity. The fetal haemorrhage had left his brain without oxygen for too long and there was nothing else that could be done for him. Suddenly, I felt like we were being cruel by keeping him alive, he had already gone and we were selfishly trying to hold on to his broken little body. The team of nurses in NICU were wonderful. They gave us the privacy we needed and the time that we wanted to spend with our little boy. They asked us if we wanted a Priest to christen him – we declined, we were never religious and no amount of praying was ever going to bring our son back to us. We are even less believers now, how could any ‘God’ let this happen?
We bought in our families to meet Tate and say goodbye to him. It was pretty obvious to the rest of the unit that we had just received the worst possible news, the nurses put up a privacy shield around Tate’s cot and bent the rules by letting us have as many visitors as we needed. Once Tate had met his family, they then helped us wash him, they let me change his nappy and helped us pick out the clothes we wanted him to wear. We chose what should have been his ‘going home’ outfit. We were given a ‘4Louis’ memory box, which enabled us to take his handprints and footprints (which we would both later get tattooed on our bodies). We cut a special lock of his beautiful blonde hair and made casts of both his hands and feet. 
We didn’t want to say goodbye to Tate in a room full of people we didn’t know and around lots of other distraught parents, so we arranged to Tate to be bought into a little side room, a room where we could be together as a family for all of a few minutes. 
Tate passed away peacefully in his Daddy’s arms at 6.04pm on the 21stOctober 2015. A tragic and unnecessary death, which could have been easily prevented with a simple colour Doppler ultrasound. His death crushed us and we still suffer from the consequences of it daily, ask anyone who has lost a baby and they will tell you that the grief never goes away, you just learn how to live with it each day. Once you lose a child your life is forever changed. Tate became a big brother to Chester in April 2017 but no matter how many living children we may be fortunate enough to have, Tate will forever be the missing piece of our family.


You can find more information on Vasa Praevia here: 
International Vasa Previa Foundation (http://vasaprevia.com/)
Vasa Praevia – Raising awareness (http://vasapraevia.co.uk/
A new Petition has been set up to challenge the RCOG to change their recommendations to NOT screen high risk pregnancies for Vasa Praevia please help us to save little lives by signing it and sharing if you can: https://www.change.org/p/royal-college-of-obsetricians-and-gynaecologists-save-150-babies-per-year-by-routine-screening-for-vasa-praevia

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Thank you so much Sarah for sharing beautiful Tate. It's so important to talk about rare conditions, I'm honoured to be able to share your story. 

Katie xx


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1 comment

  1. Thanks so much for your courage in sharing this story dearest Sarah - it fills in gaps I did not want to pressure your parents on. You are amazing parents, and in Chester - we get the constant reflection of what Tate would have been.
    Al my heartfelt Love and Hugs to you both,
    'Uncle' David

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