Today I feel like sharing my story. So, on the 23rd of August my partner Sarah and I went in for our 21 week scan. Everything was fine, great even. We found out we were having a little boy and according to the ultrasound he was normal and healthy. The radiographer decided to check Sarah's cervix and from there our life was turned upside down. She spotted something but needed a radiologist to check so a nurse went off in search of one. Soon we had not one but two radiologists, the radiographer and a nurse all in the room. They had discovered Sarah's cervix was open; we didn't know what that meant but they wanted us to go off to the Women’s Assessment Unit to check further. Before we left, we asked and were given some information. Sarah got up to walk to the assessment unit but was promptly told she would need to go by wheelchair - surely this was just a precaution.
We get to the Assessment Unit and are greeted by Ben, our first doctor. He takes a look and confirms Sarah's cervix is open; he gives us more information, he tells Sarah to lie down not sit up. Blood is taken from Sarah and we wait. Two more Doctors come to explain in detail to us what is going on and our options. We will deal with Kate for the next 3 days: she says she is the doctor on call tomorrow and will be primarily dealing with us. They explain to us exactly what is meant by “an open cervix” and some options and scenarios. Kate is very straight forward and honest - I like that about her. Our situation is not great, if we could make it to 30 weeks (24 - 26 weeks is safe but possible disability), then we have a chance of a healthy baby but we have a few things that may stand in our way. Kate says if there is no infection there is a chance they may be able to stitch Sarah's cervix but as it is already open it will be very difficult and may not hold.
The results of the blood test come back and Sarah has an infection. Sarah seems healthy so it is likely the infection is with the baby, this is not good news. We cannot go ahead with the stitch as it will become a site for the infection to grow. They admit Sarah and monitor the infection levels. I stay with her but need to leave that night. I go and get her some things to stay at hospital. I cry that night, still not really sure what is going on.
The next day I return to the hospital. That morning, Sarah has more blood taken and we await the results from the doctor. Sarah did not sleep well on the uncomfortable hospital bed. We take comfort in each other through waves of emotion trying to make sense of what is going on. Kate comes later that morning to see how we are, she does not have the results of the second blood test yet and has learned her lesson not to make plans without all the information.
Finally Kate has the results of the second blood test. Strike 3 - more bad news. The infection has increased overnight significantly. There is little chance this baby will survive and a real chance it may die inside Sarah in which case Sarah will get sick. Again we appreciate Kate's honesty. She looks at us as we remain composed and says "this is not right, you shouldn't be so together". She lets us take in the news and we fall apart. We hold each other. We decide we need to do what is right for Sarah's body. We need to terminate. Kate comes back comments that our reaction is now more appropriate. We tell her we want to terminate, she agrees it is for the best.
There is more waiting as Sarah will take one tablet now to stop the pregnancy, then more in 2 days to induce labour. As these tablets terminate life, there is a process and paperwork that needs to be done. We just want to go home spend some time away from the hospital.
Finally all the paperwork is done, Sarah takes the tablet and we go home and begin to grieve. Sarah's sister, husband and child come to see us and we catch up with them for a while. Later that night Sarah gets pretty bad pain. I ring the hospital, explain what is going on: they say it could be the drug working but to monitor it and come in if it gets worse. I pack a bag ready to return to hospital. We go to bed with Sarah still getting regular pain. At 10:30pm Sarah wakes me and informs me her waters have broken.
She is cool calm and collected, and calls the hospital, they tell her to take a shower and come in. I put the sheets in the wash, make sure everything is in the bag and generally run around in a panic. We arrive at the hospital and are admitted to the labour ward. Sarah is in pain, they give her a shot but it barely takes the edge off; later they give her some more pain relief and a sleeping tablet. They set up a bed for me next to her and I fall asleep. At 4:10am, Sarah felt she needed to push. She wakes me up, calls the nurse and reaches over to grab my hand. Not wanting to disturb her I remain in bed holding her hand (the way she tells it, I lay there almost still sleeping). She kindly suggests I get up. I do so and sit next to her and hold her hand.
At 4:45 our child Phoenix Ian Christopher Williams is born. The hospital staff wrap him and hand him to Sarah first, then to me as Sarah still has work to do. We both see signs of life, a little wriggle, a beating heart. We know they won't last long and we treasure them forever. The hospital staff take him, clean him up and dress him. They take many photos and hand prints. The staff are amazing. We spend some time with him then it is back to sleep. He stays with us in our room.
We wake a little later: now is the painful process of telling family. We break down on every phone call. We decide it is going to be easier to use Facebook. Over the course of the next few days many people come out of the woodwork sharing their story. We begin to realise how common this little secret can be. We decide to be open and public.
Phoenix stays with us that day, we love him and watch over him. He has Sarah's nose which is a blessing as the Williams schnoz is prolific. We do all we can to take care of each other; Sarah needs to stay in hospital for a day on a heavy course of antibiotics to clear the infection. I stay in hospital with her and we watch movies and cry. My Mum comes later that day (Sarah's Mum and Dad are in the country and we tell them not to come down just yet).
We decide we have kept Phoenix long enough it is time to say goodbye. We both hold him one last time and wish him well wherever he is. We cry again. Then call the nurse to take him. She tells us we can ask for him back if we need.
We leave the hospital the next morning. It is hard to leave without our son. What do we do now? We go home and cry. There are flowers at our door. Sarah's parents come down to help around the house. We hug and cry. We need some groceries so Sarah's Dad and I go off to the supermarket. Ian goes to get some fuel while I go to the shops. I walk through the shops in a daze, I get the food on the shopping list plus extra and head to the checkout. While I wait to be served I overhear the next checkout talking about the customer’s children and how big they have grown. I begin to cry. I carry out the transaction with tears streaming down my face. I just want to get out of there as quickly as possible. So I leave without a bag of shopping. Ian comments on how two bags of shopping doesn't seem like enough for the list Sarah made. I think nothing off it I just want to go home.
When I get home I realise I am missing a bag of shopping. Sarah's Mum and Dad go back to the supermarket explain what happened, it seems someone else picked up my bag of shopping by mistake so they recollect all the items missing on my receipt and also get us flowers.
Over the next few weeks we meet and talk with our awesome friends, each time we tell our story it gets easier. We get so many flowers we run out of vases. We get out when we can and stay home when we need to. We check in with each other regularly simply asking "are you OK". We keep Phoenix's room set up and put in the keepsakes from the hospital and our friends. Our puppies look after us also. Sarah's Mum and Dad offer us a few days away by the river in Barmera and we go down to get away from things. We have good days and bad days but we have them together and it brings us closer.
I ride my bicycle when I can. A mix of emotions washed over me on my first ride. Sadness for I will never get to teach my son to ride a bike but also happiness for he will always ride with me. I could imagine him on the back of my bike shouting "faster daddy, faster" with glee. I am glad when a SIDS counsellor told us grief is tiring and some days we are both so exhausted.
Today was my first attempt at going back to work. Over the weekend I had some anxiety over how the day would play out, added to regular anxiety I have as a new teacher wondering if I have adequate and engaging lesson plans. Sarah and I couldn't sleep Saturday night and we both shared our concerns. This helped and Sunday night and this morning I felt fine. However as I was driving to work I broke down for no reason in particular. I decided to use today as a first step. I went in and spoke to my colleges and my home group. It helped and I hope tomorrow will be a better day.
When I got home Sarah received a package from her cousin. They named a star after Phoenix Ian Christopher Williams in the constellation Phoenix, so I was glad to be home to see that.
Going forward there have been good days and bad but we have faced them together. We have faced our niece and nephew’s 1 and 2 year old parties. Both of us wanting to quit work but getting through it and just life moving forward when sometimes I feel it should just stand still.
Recently my work banded together to buy us an amazing telescope so we can view Phoenix's star. Sometimes people don't know how to react or don't react in the way you want but sometimes they do amazing things. Barry
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