Today was a day I have been anxiously waiting for. A day that I dreaded and yet a day that I knew needed to come. It was time to once again attempt to advocate for myself and for my baby boy Reuben, this time with the words I had been preparing for quite a while now. This morning my husband and I attended our 6 week post birth appointment at the hospital.
I walked into our appointment this morning with anxiety riddling my body: from my cloudy, irritated brain and watery strong-willed eyes, to the the butterflies in the tips of my fingers and stomach, right down to my hesitant, fearful feet. As my name was called, I instinctively I knew I just needed to breathe and it would be okay. Well as okay as such a thing could be. Once in the sterile room, I pulled out my prepared typed sheet of questions, as ready as I could be to finally verbalise these questions that have circled my mind since the awful day that I lost my baby boy.
At first we met with a lovely and compassionate female doctor who gave us results to Reuben’s postpartum and to the many blood and placenta tests. This gave us some answers. She also looked at the placenta results from the twin’s pregnancy and we discovered the same issues with the girl’s placenta that my doctor had never disclosed to me. To say I was angry and upset about this is an understatement. Don’t I deserve to get the results about my own body and own pregnancy? Aren’t I entitled to this even if you think I wouldn’t understand? Because these results would have informed future pregnancies, Reubens pregnancy. All I was ever told was “sometimes we don’t know why these things happen”. The paperwork I was given last year to make a complaint about this doctor will finally be getting filled in and sent. No longer will I feel afraid and guilty about affecting him and his career. This information was the final straw and has informed this next step that I will be taking for Dahli, India, Reuben and the future mothers and babies that land themselves in his care.
After we were taken through these results this doctor did her best to answer as many questions as she could. She was very sorry, kind and patient and at times understandably nervous and unable to answer my questions. She also used Reuben’s name—a million brownie points for her. I was determined not to be rushed through and pushed out the door of this appointment. This was our time and we deserved all the time in the world until all our questions were answered and we felt we had received what we had came for. This of course led to the addition of another doctor, the director of specialist outpatients.
This doctor’s speech was very slow and his uncertainty was filled with many umms and errs. When it seemed like he was squashing me and my questions I pushed and fired back. When he was happy with his answers, I pressured and wanted more. Right now I feel pride for how strong I was and amazed at the confidence I found to stand up for my baby boy. We were of course told things that should have been done and about a wonderful new program that will be taking place to avoid these things…all the while I thought blah blah, fucking blah (excuse the angry cursing please) and when there was a pause I would remind him…”Yes but I did not get this”….”Yes but its too late, my baby is dead”…”so you’re telling me that if a high risk pregnancy came in tomorrow you wouldn’t refer them on to the high risk clinic?” I did not filter my thoughts, I did not worry that I might offend or upset someone. I needed to show these medical professionals how wrong this all is. I needed them to know how much I love my son and how deep this grief goes. I needed them to know that they did not do enough and that they made me feel helpless, hopeless and unheard. I used my words. I used my heart. I used my stubborn spirit to do all that I could in honour of my son.
I knew we wouldn’t remember all that happened in this appointment and so I supplied the doctors with a copy of my questions and they will be replying to them in email as well. There is one thing I do remember right now that made me feel kind of relieved in a way. And that is that I finally got to say something that has been burning a hole in my heart for a very long time. I told these doctors that I am so disappointed and upset that I was never taken seriously. I wasn’t taken seriously with the girls and I nearly lost them. I wasn’t taken seriously with Reuben and now I did lose him. These medical professionals need to learn to listen to mums because sometimes, well actually not sometimes, I honestly believe that always, a mum’s intuition knows best.
Another moment of the appointment that sticks with me is that the doctors went on to tell us what usually happens with these appointments (the ones mum’s who lose their babies have). I learnt that usually we should have an appointment a few weeks after to ask questions and then again at six weeks to answer any questions that may have been unanswerable at that early stage. When I was told this I laid my heart out there and I said “You know I never got a phone call about a follow up appointment. I had to make this appointment. It was like ‘well you gave birth but your baby died so you don’t deserve an appointment’…that’s what it felt like”. Its not really the words that I said that stick with me so much as the sad and regretful faces that I saw on these doctors. It is my hope that no other mum at this hospital, in this situation is made to feel this way because I have made the doctors totally aware of how shit that is and how awful it feels.
The unanswerable questions may or may not be answered in the next appointment we have or the email that should eventually be sent. But one thing that has put me a little at ease is that when I asked the question ” I don’t understand what more I could have done…my referral said high-risk…I verbalised regularly in my first appointment that I am/was high risk….what else could I have done?…” the answer was ‘nothing. You did everything you could’.
So these medical professionals now know my thoughts. They know that I believe that my son could have been saved. They know that my son was living and healthy one minute and gone the next. They know that things which should have been expedited were not and will now begin the search and cover their bums to explain why my sons life or death situation was not a priority. They know that I have the paperwork to prove that my referral was in fact high-risk and that I should have been liased with and most likely referred to the high risk clinic. They understand that I will not be pushed over and this awful situation will not be swept under the rug. I have fought and I will continue to fight until I am satisfied with the answers that we receive. This is the least that I can do to honour my baby boy.
Having no control is hard. I had no control when my baby girls were born and to fill this hole I expressed breast milk like a mad woman. It was all that I could do. This time I had no control yet again. And its a pretty helpless and hopeless feeling that all I have been able to do for my baby boy is write him poems, plan his funeral, order his urn, be strong for his big sisters and fight for answers. I know nothing will fix this. Nothing will bring him back or mend the huge, gaping hole in my heart. But this appointment was another something. It was something to help me through the grieving process. It was something to help me honour my baby boy. It was something to be in control of. It was something to make me feel strong, fearless and powerful – much like the warrior women that I consider my baby girls to be.
Thank you so much for the ongoing support. Apologies for the possible many spelling and grammar mistakes…it seems a couple of glasses of wine help to get my creative juices flowing.
Love Terri
resuscitation devices used to provide breathing support if a baby stops breathing or has an apnoea (pause in breathing associated with prematurity). These devices provide blended air/oxygen and an inspiratory pressure and end expiratory pressure. We are hoping to raise enough funds to purchase two of these.
