Henry, I have typed and retyped this letter so many times, I have typed and deleted it again several times since last Tuesday as I have not even had the words to explain, the words to try to put together to get this all out. My brain has had trouble even beginning to comprehend things I knew were already true but are now confirmed.
Not everyone knows the whole story Henry, your story in fact many people don’t, they know what I have shared so far, how much I have said, but I have never said it all and there have been reasons why until now I have chosen not too.
Two weeks after we returned home without you Henry, I got online, I researched I looked up NSW Health Policies, I read these, I researched other information, I did this because I know that my treatment within the hospital during my stay around your labour and birth that things were not right, that procedures that should have been, appear not to have been followed and that this should not have happened.
After doing this research, I found this was the case, amongst trying to grieve I somehow put together a letter of complaint to the health district referencing this to policies and procedures as well as other information. I somehow found the strength during this difficult time to do this and for several reasons Henry, one and the most important reasons is in honour of you and to ensure people are held accountable, two was so that no other family has to got through the trauma and experience we have for the same reasons and three to ensure there is change so that it can never happen again.
It has been an extremely stressful and long process Henry in amongst trying to deal with our grief, trying to get through each day there have been emails, phone calls, follow ups and meetings, there has been battles of not feeling like we are heard, ensuring we are and ensuring this did not just get brushed away under the carpet. It has been so very exhausting Henry, so exhausting to be on an important phone call and not break down, so hard to piece together a factual email without adding emotion and so incredibly draining to ensure facts were recorded as soon as we left the hospital so as to ensure they were not forgotten.
Theres been hours of reading of pouring over yours and my medical records even though I haven’t felt like I would have the strength… ‘do it for Henry’ I tell myself… ‘do it so no one else has to endure this awful pain and heartache you do daily’ I want to ensure that this will not happen again to anyone, not for the same reasons it happened to us.
We have been met with inappropriate responses and comments along the way such as ‘don’t make this make you not want another baby’, ‘you are 36 this year’ (tick tick tick, I didn’t respond to that but thanks… we had a perfectly healthy baby until people stuffed up), comments such as ‘I can’t tell you anything’ when chasing up the progress of the complaint and ‘don’t get angry’ …… But Henry I never gave up because it’s so important that this is done, done correctly and professionally.
Last Tuesday Henry, your Dad, a friend and I entered the hospital halls, I walked down the same halls I had when I walked in thinking we would be taking you our baby boy home…. I can not even begin to describe the feelings from the pit of your stomach having to return to this place, the feeling that encompasses your whole body as you remember walking those halls as you try to hold it all together when you really don’t want to walk through that place, I saw the sign pointing to where they took me to get an ultrasound to confirm your heart wasn’t beating anymore, we walked through the hall where your Dad had to practically hold me up as I was consumed from the pain of knowing you were no longer coming home with us.. our friend accidentally snapped this photo putting her phone on silent but decided to send it to me as she wanted us to see the moment two brave parents walked through those halls again…
Last Tuesday Henry we attended the most important meeting so far, a meeting with senior independent clinicians who have been reviewing your case, who have been the ones to investigate my complaint and the circumstances… Due to my previous experience in the lead up to this, I wasn’t hopeful about this meeting… I was expecting them to be dismissive to shift blame to get us out of there as fast as they could….. but what we got Henry was the opposite.
I should have known it would all be good when I found out one of the independent clinicians we were meeting with, well his name is Henry, I should have known that was a sign from you to say ‘Mum I am going to make this as ok as I can, I will look after you’ and that you did my beautiful boy.
I spoke in this meeting Henry as we went over it all, I spoke as tears poured down your Dad’s face, tears so fast that he couldn’t keep up with wiping them away, I spoke about our experience, I listened as they repeatedly said ‘I’m so sorry’ I asked my questions, I ensured I got answers ……. I felt what was left of my broken heart shatter in to the most tiniest pieces it will never be possible to find them all to piece it back together again.
Those clinicians Henry, they went through with us step by step the notes from their investigation, they didn’t hold back the facts, they confirmed what I had brought up to be addressed… I won’t explain all of what happened while I was in hospital Henry but they found that I was given a medication that I should never have been given by a midwife, this medication has a standing order on it and should not be given out by midwives and to pregnant women especially in labour…. They found that I was not adequately monitored and that I should never have been left for over nine hours without being monitored as well as your heart beat, they found record keeping was not adequate on my medical records, they found that had I not been ignored by a particular midwife about my concerns and taken seriously that this never would have happened, they found had I not been given that medication, had they checked on me and you as they were supposed to every 3-4 hours, had certain factors been picked up on and explained, had they adequately assessed me and ascertained what stage of labour I was in…… THIS NEVER WOULD HAVE HAPPENED…. The clinician said to me “it is my belief had these steps been taken as they should have Henry would be here today”.
They also found Henry as I outlined in my complaint, policies for our after care were not followed, they quoted my words in their investigation on how ‘ill equipped’ the hospital was to deal with the situation, they talked about what after care we should have received, what support, that we never did and acknowledged the importance of this and how they were so very sorry that we didn’t receive the appropriate care.
We discussed the results of this, their findings, what they planned to put in to place as a result, what would occur, how things would change… they left us with notes to review and organised another meeting for the following week (today) to continue to go over things more and again we were met with the I’m so sorry, this never should have happened.
We left that meeting last week, we left and went out to get some lunch, I left that meeting not being able to describe how I felt and it took a while to know… In the days following that meeting Henry I have had some really really dark days, it is like all the build up all the fight, all of it and then the information, the confirmation of what we already knew but to have it confirmed it hit and it has hit so incredibly hard… I have had bad dreams, panic attacks and thoughts so incredibly dark after those panic attacks, thoughts like I have never had before and all because the pain of this, the unfairness of this, the fact someones negligence and ignorance can leave us with this result and no matter what I do, it doesn’t change our outcome it doesn’t bring you back..
I’ve had days of the tears not being able to stop, of struggling… I mean really struggling to get out of bed of not knowing how what to do and how to do it, I feel like maybe it hit so bloody hard as with all this going on I truly haven’t just stopped without this in the background to grieve you, truly just grieve you and then because well how am I supposed to make any sense of this? How do we ever cope with this, with knowing really you should be with us.. and how does this happen? how did it all just happen to us?
Today Henry, today we went back for our second meeting, we went back so that we could review the clinical notes once more, to ensure the information was correct and to review with the clinicians their recommendations, their plan for action and when these will be completed. As a result to of this Henry there will be changes, changes to the way the ward is staffed, changes to certain procedures to ensure that there is adequate monitoring, adequate note taking, adequate assessment of patients who present to the ward, changes to protocols, there is the development of a local policy to ensure families receive support, there has been education for staff, removal of old information and assurance that all staff know, there has been separate action taken in regards to performance and much more…
I do feel the need Henry right now to say that not everyone we dealt with during my stay in the hospital did the wrong thing or was awful, we did encounter some very lovely caring nurses and midwives over the three days who did their job and others who did go beyond. It is just so unfortunate we also had ones who didn’t do the same.
This photograph Henry, the following photo is one your Dad captured without me knowing, this is what it is like, this was last Wednesday after we had met at the hospital Tuesday, this was me at 3pm in the afternoon I had gotten back in to bed unable to function, to do the day… this is grief this is often how you’ll find me tears, so many tears as I hold on to your cushion and I hug it and cry my eyes out because it just hurts it hurts so damn much.
I sit this afternoon Henry feeling so incredibly lost, I sit this afternoon feeling so overwhelmed as the enormity of it all sinks in, as it all hits… As I think about what has happened, what we have done, as I sit here and think about the exact changes that are going to be put in to place, prevention measures, accountability to ensure that this does not happen for another family… all because you are my drive and I want to be a voice for you.
As I sit here Henry the tears form in my eyes, they are there because the sadness that it doesn’t bring you back to us hits, the sadness that we really should have you here hits, the fact I got my period as well which is another month of not falling pregnant with a sibling for you, the sadness that we never see you grow, change your nappies, watch you giggle, hear you cry, watch you walk, talk, go to school, learn to drive, fall in love… We miss out on all of that so much we miss out on and things could have been so incredibly different, this could have been prevented, this should have been prevented, this never should have happened. I am so unsure Henry how we ever get past that.
We deal with the days ahead, the days of being so incredibly broken, of grieving the loss of you our so loved and so wanted baby boy, of feeling like we will never find happiness again, of feeling like there is no end to this pain, of the aching, of the putting on a smile and trying to work through a day when all you feel like doing is crumbling to the ground and crying and of wondering how can we possibly make it through another day, of how we can possibly keep going, of not knowing what direction to take.