I’d like to tell you the story behind a tweet which was sent out late on a Saturday night but has had a far greater impact than I could ever have imagined. This is the tweet:
Josie Jean Coates was born sleeping at 18.35 today, at 21 weeks gestation. She had an extremely rare skeletal condition. We’re devastated but would like to thank @LiverpoolWomens for the exceptional care our family has received and is continuing to receive.
— Gareth Coates (@GarethECoates) November 21, 2020
A couple of months ago, I honoured my Great-Uncle, Norman Raw, following his passing at the age of 100. It seems utterly unfair that our family has suffered a further loss so soon after Uncle Norman’s death, particularly given that our latest bereavement was our third child, Josie Jean Coates.
Josie was born sleeping on Saturday 21st November, at 6:35pm after a whirlwind week which started with excitement and ended with the sorrow that can only come from a situation such as this.
Josie’s siblings are 11 and 5 so when we attended the 20-week scan at our local Health Centre on 16th November, we had an idea of what to expect. The 20-week scan is often the moment at which new parents discover the gender of their unborn child, which was the part of the appointment we were particularly looking forward to. Of course, that’s not the only reason for a mid-pregnancy scan. Here’s what the NHS Website says the scan is for:
The 20-week scan looks in detail at the baby’s bones, heart, brain, spinal cord, face, kidneys and abdomen.
It allows the sonographer to look for 11 rare conditions. The scan only looks for these conditions, and cannot find everything that might be wrong.
Sadly, our sonographer indicated that she thought our daughter had one of those 11 rare conditions and referred us to the Fetal Medicine Unit at Liverpool Women’s Hospital. It was only after she had told us that she had spotted problems with our baby’s skeleton that she asked whether we “still wanted to know” the child’s gender, which was a horrible, jarring moment. Given what I learned subsequently, I put this down to her being shocked at the discovery, rather than anything else.
Of course, my wife and I immediately did that thing you’re not supposed to; Google obsessively in an effort to understand what might be going on and what the outcomes might be. There was only one condition on the NHS’ list which referred to the skeleton, but the name began with a horrible word which made my blood run cold: lethal.
We spent two days going through as much information as we could find about Lethal Skeletal Dysplasia, which seemed to be what Josie might have and how we might act as parents if the diagnosis was confirmed. The thing that sticks in my head about the condition is that, although there are hundreds of different ways it can manifest itself, it occurs only about once in 10,000 pregnancies.
1 in 10,000. Every parent knows that their child is special, not many get told that their baby is 1 in 10,000. I can’t help but wish we hadn’t been…
By Thursday morning, we were in FMU, having a further scan, which was carried out by Dr Kate Navaratnam. This scan was done in a painstaking fashion; Dr Navaratnam took her time to gather as much information as possible and was joined during the scan by Professor Zarko Alfirevic. I didn’t realise until after the event just how eminent Prof. Alfirevic is; he is an Associate Pro-Vice-Chancellor at the University of Liverpool, amongst other things. After almost an hour, the Professor said, quite matter-of-factly: “we need to have a chat”.
The scan had revealed multiple fractures and issues with skeletal development, including limbs which were shorter than they ought to have been.
In addition to confirming our worst fears, the Professor and Dr Navaratnam were happy to answer any questions my wife and I had and discuss how the situation might be handled. We were not patronised in any way, nor were we told we couldn’t make a specific choice in respect of our daughter’s care. In fact, I think we rather surprised the professionals because as soon as they confirmed that Josie’s gestation could be brought to an end in a manner that ensured she didn’t suffer in any way, we indicated that was what we wanted to happen.
That looks cold, reading it on a screen, but it really wasn’t. No parent wants their child to suffer and Prof. Alfirevic had looked me in the eye and said “we can’t fix this”. He had offered us other options too, but had suggested that some of those would have simply delayed the outcome we eventually reached.
We could have done nothing at all and “let nature take its course” but once the Professor predicted that our daughter would “almost certainly” go to term and be born alive, but would live in pain for a very short time, that struck me as a spectacularly selfish thing to do.
The following day, we started the process of saying goodbye to our little girl with COVID-19 tests and medication which would stop the production of pregnancy hormones within my wife’s body. Somewhat unexpectedly, we found ourselves back at the hospital that evening, having been blue-lighted from home after things progressed a little more rapidly than planned.
Having been reassured by the knowledge and professionalism of the team at FMU, we were then utterly overwhelmed by the kindness and expertise of our midwives. We were in a special room within the Delivery Suite, which was totally self-contained. There was a fold-out bed for me, a shower and a nursery for Josie. Night shifts were covered by Jenny, while the actual delivery was carried out by Jane. Both were absolutely brilliant and not just with mother and baby. From time to time, I got checked in on too and we never once felt pressured, or rushed or that the situation was out of control.
As it turned out, we were very much part of ‘The J Team’ over the weekend; once Jenny clocked off on Sunday morning, we were looked after by a midwife named Jo and during Jenny’s break on the Friday / Saturday shift, the cover was provided by Janine. All four midwives we spent time with were brilliant. We’re so grateful to them.
Almost 24 hours after calling 999, Josie Jean was born at 6:35 pm. She was sleeping as she arrived and although she is tiny, she looks just like her older sister; a beautiful little girl. I was able to see in her hands some of the things the scans had shown but also just how lovely she is, even at 21 weeks.
It was nearly five hours later that I sent my tweet, while my wife slept. It was for my own benefit as much as anything, but the reaction to it was remarkable. By this morning (Wednesday 25th November), it had been viewed more than 5,000 times and as well as receiving condolences from friends both near and far – I got messages from New Zealand and Belgium as well as from Prescot and Kirkby – a couple of senior people from the Women’s Hospital also got in touch. This was the message that came from the CEO, Kathryn Thomson:
So sorry to hear of your loss. Please do access all of the support that @LiverpoolWomens will offer you at such a difficult time. Our thoughts are with you and your family x
— Kathryn Thomson (@CEOlpoolwomens1) November 23, 2020
Angela Winstanley, the Maternity Safety Champion, also got in touch:
The fact that at one of the most upsetting & devasting times,on the sad loss of your beautiful baby girl, you take the opportunity to thank our staff shows,beyond measure your strength.On behalf of all our teams here,I will make sure your thanks are passed on. R.I.P Josie Jean♥️
— Quality & Safety Midwife. (@MWFetalHeart) November 23, 2020
I have to say that I don’t feel strong, even five days later. Most of the time, ‘numb’ is about as good as it gets. But I think those two messages speak volumes about the Hospital’s values and culture. I think it is brilliant that such busy people took the time to get in touch; they didn’t have to! The messages are just one aspect of the outstanding care we’ve had so far. I say ‘so far’ because we’re now working with the Hospital’s Honeysuckle Team, who support families in situations like ours.
Josie’s journey continues; a post-mortem is being carried out to check whether her Dysplasia is genetic (in which case, her siblings will need to know when the time comes) or whether she was just exceptionally unlucky. Professor Alfirevic was confident that her case was a one-off (I think he said it was only the second he’d seen in a 30-year career), but we will learn more in time.
As sad a tale as I’ve told here, it ends on a couple of positives. Firstly, I am so grateful to everyone who replied to the tweet whether they are a friend, a colleague or just someone who reached out of the kindness of their heart. Thank you all.
Then, there was what happened after we left the Hospital on Sunday afternoon. As the taxi progressed along Crown Street, a rainbow appeared. This rainbow remained in view for more than half the journey and by the time we reached the Sainsbury’s at Rice Lane it was positively dazzling. I’ve never seen a rainbow quite like it! I’d like to think that was a message from our beautiful girl, letting us know that everything is going to be all right.