Thursday, 30 November 2017

Terminating our Baby Boy's Life - Our Story with Spina Bifida by Lucy

You never think it is going to happen to you. The ‘it’ being miscarriage, stillbirth or medical termination. The ‘it’ that happens to so many women around us. The ‘it’ we don’t speak about until it’s happened to someone close to you. 

Falling pregnant and becoming a mum was something I had always wanted from a young girl.  Shaun and I had been together for years and together, we had made the decision that we were ready to start a family. For us, we fell pregnant easily and couldn’t have been more excited. 

Our 12-week scan was the best thing I have ever seen. Measuring perfectly to date and fist pumping to say, “Hey!” Feeling great and with a ‘healthy’ 12-week scan, we did what most people do. We told our extended family and friends. I decided to do a social media announcement, sharing our excitement with everyone.  Comments of congratulations poured in.  We were just so excited. If only we had known what was ahead. I now have a very different view on the ‘announcement’ of a pregnancy.

Our 19-week scan was booked and the weeks were dragging leading up to it. I couldn’t wait to see our little bub again! Mum even came along, being the first grandchild in the family, it was all so exciting. The sonographer explained that this scan would take longer because she had lots of measuring to do. It was difficult as bub was moving around so much.  She was silent throughout, paying special attention to the heart, spine and brain. As a trained paediatric nurse, I just assumed it was due to the importance of these organs.

The lady asked me to empty my bladder and we would finish the scan when I got back. When the lady returned, she came in with another women and introduced her as the doctor. My heart sunk. I was anxious, nervous and for some reason knew whatever was coming next, was going to absolutely ruin me. The doctor explained there had been some concerns with my scan and that I would need to book in to see my GP that day. I crumbled. Between the tears, I asked why and what. She told me she had to finish the report and my GP could go over the results. I asked again. I begged her to tell me. I asked what part of the body she was concerned about. Five words I did not want to hear… “the head and the spine”. 

We saw my GP an hour later, who booked a scan with a specialist at King Edward Memorial Hospital (KEMH) that afternoon. She couldn’t give us much explanation until we had a secondary scan. She spoke with that same devastating tone and body language. 

We arrived at KEMH feeling absolutely shattered already, knowing the day was nowhere near over. The waiting room was full; full of pregnant, happy and excited women, with their equally as happy partners. Shaun and I sat down, out of place, in a waiting room we wished we wanted to be in. 

We were seen by a lovely midwife who again spoke in that same tone as the doctor and my GP. We knew the news was going to be horrible. A clinical midwife was going to do the scan and finally explain what we were dealing with. She was calm, friendly and comforting.  I lay down on the bed and lifted up my shirt to expose my small baby bump that I was so proud of. It was finally showing and people were starting to notice. 

She pressed the probe against my tummy and showed us the head shape they had initially been concerned with. She ran the probe down my baby’s back, showing us a little sac growing outside the spine that contained important spinal nerves. Growing outside the spine meant these precious nerves were exposed and becoming damaged as my baby moved inside my womb. It was confirmed. Our beautiful baby had spina bifida, formed when the neural tube closes to form the spine in the first month of pregnancy. There was nothing I could have done differently, nor could it have been detected until 16 weeks. She explained what life would be like for our baby as he grew older. She explained the potential and the potential challenges. She was honest about what our future life would entail. We had a choice to make. The hardest and most unfair choice a parent should ever have to make.

We took the news home, with a decision to be made overnight. I made the call the next morning. I somehow managed to tell the midwife we had made the decision to terminate. Words that seemed so hard to spit out. We knew this was the right decision for us and there was no thinking otherwise. That doesn’t make it easier to say because we were ending a desperately wanted pregnancy.

I went in on the Friday to speak to the doctor before being admitted on Saturday morning to give birth. We sat in a quiet room, it looked and felt like the ‘bad news’ room we had in ICU when I was nursing. Couches, tissues and a jug of water on the table. The doctor explained what Saturday was going to look like. He explained the potential chance of theater if my body decided it didn’t want to pass the placenta within an hour after birth. He explained that it could take all day. He prepared me for the worst I suppose, as if it could get any worse than it already was. Then came ‘the pill’, the little, light blue pill that held so much power. The pill that would stop my pregnancy. Stop the hormones rushing around my body. Stop my baby’s heartbeat. Going against everything I thought I believed in, until it was me in this position. 

Saturday morning we drove to hospital in silence. I was going in knowing we would leave with nothing. I was admitted at 8am to a gynecology ward. The nurses were amazing. We got started at 9am and two tablets were inserted to induce labour. It was uneventful until 12pm. The pain started off like normal period pain and then started getting worse. At 1pm the nurse inserted the second dose and it only got worse from there. Contractions started and the pain grew. 

I can’t explain it in any words, other than it being the worst pain I have ever experienced. I suppose the only people that understand, are those that have endured childbirth. But for mine, there is no motivation of a healthy baby, full of life. I needed 3 intramuscular morphine injections throughout and the gas (which did absolutely nothing!). By 5pm the pain was unbearable. 

Shaun was my superstar during this whole ordeal. To see me go through that much pain and emotional suffering would have been horrendous, but he was incredible and inspirational. The doctor came in to review me. I was curled over on my knees and elbows, crying and screaming the ward down, when I felt something different. The nurse explained that my waters needed to break so nothing was going to happen until that happened. But it was. I knew it was coming. I gave a push because it felt right and out he came. The pain was over almost instantly. 

Our baby, William, fully encased in the intact amniotic sac, was lying on the bed, all 23cm and 220 grams of him. My waters did not break, instead I pushed a ‘balloon through a small cervix’ as the nurse explained. It was a ‘Caul Birth’, a 1 in 80,000 chance and apparently a sign of good luck. 

Shaun cut our son’s umbilical cord and the nurse took him away. I was somewhat relieved, but physically and emotionally exhausted. I had another injection to help my body pass the placenta, which ended up passing just in time – saving me from theatre. 

We asked to see our baby and the nurse returned with a tiny basket, something your young daughter might carry her doll in. She took off the blanket to reveal our little William. I felt this sense of joy. For some reason, I couldn’t cry. It was a strange sensation, but I felt so proud of our boy. I fell in love. He was perfect. His nose, lips, fingers and toes… all perfect. He had the obvious lesion on his back, confirming his diagnosis, but if it wasn’t for that, you couldn’t tell. He looked so small in his daddy’s big hands. It wasn’t the way it was meant to be, and it certainly wasn’t fair. No parent should ever have to do this. That night, we held him until we couldn’t keep our eyes open any longer. It was a huge day, and we were both exhausted.

Our parents and siblings came in to meet and cuddle their grandchild and nephew. It was something they were all hesitant about, but they are now so glad they did. A proper goodbye and closure for everyone, so when we talk about him, they just get it.

The next day, before discharge, we spent the morning with William. I couldn’t take my eyes off him. He was amazing. When the time came, saying goodbye and leaving the hospital was cruel. I still don’t know how I managed to walk out of those doors with my back to my baby boy, leaving him inside and walking away empty handed. We felt totally ripped off. 

And now, 12 weeks on, we manage… just. There are good days and there are bad days, but I know William Hugh Bryant is looking over us and will be looking over his future brothers and sisters. I am now on high dose folate, which should prevent this from happening again. Hopefully we can start trying soon. The nursery is ready and we are ready. 

We are both so lucky to have such a supportive family and a large group of supportive friends, but unless you have been through something like this, you don’t really understand, and that is what I have found quite hard and isolating. Through Sands QLD and a Mamamia podcast (Rebecca Sparrow on surviving and thriving after loss), I have found and joined two Facebook pages, both providing me with environments where I have felt safe and supported when sharing my story and questions to other amazing mums in similar situations. Reading others’ stories and journeys has reassured me that I will get through this and I am not going at it alone. It is place where I can share how I am feeling with people who just ‘get it’ that little bit more. 

I write this with a slight sense of frustration, as I wish I had been educated on just how hard having a baby can be. No one told me that these things happened as often as they do. It’s an unspoken topic that needs to be spoken more about and it frustrates me how little we all know about it. We need to start the conversation that having healthy children is a miracle and should not be taken for granted. Every pregnancy is a life that should be celebrated; miscarriage medical termination or stillbirth. This is to all the amazing mums and dads out there who have never met, held, or like us, taken their baby home from hospital.                     



If you require support after reading this blog, please contact Sands on 13000 72637

Lucy Taylor

Hi my name is Lucy, I am currently a primary school teacher, after making a career change from paediatric nursing. My partner and I lost our first child in May 2017 after finding out at 19 weeks he had spina bifida. We really had no idea how common miscarriages, still births and medical terminations actually were until it was us in the position. I wrote my blog to bring awareness to others like us, as well as to help other couples know they are not alone in this world.

Thursday, 16 November 2017

Trying to Conceive Following Miscarriages by Emily

As I sit here writing this I am currently in limbo land, still possibly pregnant and experiencing the odd reminder through a wave of nausea, but looming is an impending miscarriage, now my sixth in total. Having seen a heartbeat last week, we were told that it was too slow for 6.5 weeks and that loss was inevitable.

Waiting to miscarry is almost as bad as the miscarrying stage itself, at least then you can start to pick up the pieces and try to move on, but the waiting game is well, a cruel joke.

My partner and I have been trying to conceive for coming up to 2.5 years and while we've had no trouble falling pregnant, maintaining a pregnancy beyond the first trimester seems to evade us. Over this time I've seen A LOT of friends and work mates announce their pregnancies, often just as I am experiencing a loss. Although you may think it gets easier, each happy announcement is a huge blow and makes me wonder time and time again "What is wrong with me?"

I think my most difficult loss to date was my second. We saw the heartbeat at 6.5 weeks and everything was looking perfect, a strong heart rate and the foetus was to size. Fast forward a week or so and I noticed I felt a lot 'less pregnant' and a lot more 'normal'. I organised a GP appt and the Dr reluctantly let me book an early scan at 9 weeks for my peace of mind. Needless to say my intuition was spot on and as the silence lingered during my scan, the doctor taking longer and longer to say anything, I knew we'd had another loss. Even though I had my suspicions, it still threw me for six as really I knew little about pregnancy symptoms still. The aftermath of that loss still makes me feel sick. I cried, I mean bawled, deep primal bawls when I got home, not stopping for days. Waking up in the mornings and remembering I wasn't pregnant anymore would set me off for another round of being a sobbing mess. I now hate, I mean truly detest, going for scans and will be in a bad mood leading up to them, picking petty arguments with my partner. Luckily for me he can now see I am only lashing out due to my anxiety levels going through the roof, but it's not nice.

Something I mourn still is my former trust in my body. No one believes they are going to be the 1 in 8 females that has trouble conceiving naturally. Although like a lot of females I have never completely loved my body, I always believed that if I looked after it, it would serve its purposes and love me. Every time I endure a loss it takes me a long time to even want to start to nourish my body again, it's like I feel like punishing it with bad food and no exercise for letting me down...again.

I've decided to start this blog for a couple of reasons. Firstly, I believe it will serve me in a cathartic sense, a place where I can freely express my thoughts as they arise. Secondly and less selfishly, I really hope anyone reading may identify with some, anything,  that I share and feel less isolated in their own journey.  

If you require support after reading this blog, please contact Sands on 13000 72637

Emily Allen

Hi my name is Emily, I live in Tasmania. My partner and I are not going through the nicest journey, having now had 6 unexplained miscarriages in total. We've had every test done imaginable (which haven't given us any idea of what is going wrong) and are now looking to go down the pre-genetic screening route.  I know we will get there soon, we have to, but the path to parenthood is definitely tougher than I ever imagined it would be

I hope that in sharing some of my thoughts and experiences I might help someone else feel less isolated.

Thursday, 2 November 2017

My Story of Miscarriage by Michelle

In January 2016 I found out I was 6 weeks pregnant. I was excited but also nervous and felt so surreal that I’m actually pregnant. We had only been trying for 2 months and had decided after our holiday we would start a family. As the weeks went on, I was reassured things were going well, I was feeling excited to becoming a mum, would it be a boy or a girl? What would they look like? Who would they take after, mum or dad?

The excitement I was feeling waiting to meet our child and hearing a heartbeat was about to become crushed within one moment -  this was one of the worst days of my life. At the 12 week ultrasound, there was no heartbeat, and just a circle where there was meant to be a baby. The sonographer had told me I had a miscarriage, how was this possible? There was no bleeding, no sign, I was 12 weeks, I thought they happened earlier. I walked out devastated, upset and in tears. My child had left me and gone up to heaven. 

The following week I had to go back to the GP, and was given the option of whether to miscarry naturally or undergo a D&C at the hospital. I chose to have a D&C because I could not deal with the pain of waiting for it to happen naturally, it was too much to bear. I was told this is so common to happen by people around me, and I thought next time would be different. 

2 months later we decided to start trying again; I fell pregnant within another 2 months. Unfortunately things were not looking good this time either, after 3 weeks of blood tests I was told the pregnancy was not viable. I drove home from work devastated, in so much pain and all I wanted to do was not exist, it would be easier not to be here then go through the pain of another miscarriage. What if the doctor was wrong and it was just a scare? Days later I had another ultrasound, there was no heartbeat and I had miscarried again.

Back at the early pregnancy unit for the worst 3 days ever at the hospital. I was met by 3 unsupportive gynaecologists: it was normal and I may have to have a few miscarriages before I was successful, they would not investigate until I had 3 miscarriages. How dare they!!! I had just lost another child and it hurt, they acted like I just should detach and just push on and accept it as normal. I had the D&C and mum took me back to my home town to be with family for a few days.

Over the 6 months I had off from trying, I was told by people who were trying to be helpful to not think about being pregnant, relax and let it happen. You see this was not the problem, I had actually got pregnant quickly, I just could not seem to stay pregnant. I felt no one understood me, the only people who did were the ones who had been through a miscarriage, talking to anyone else was pointless. 

The pain had not gone away, I had flashbacks of the miscarriage constantly playing over and over in my head, I cried myself to sleep most nights. I felt depressed and did not want to be here anymore. I had gained weight, felt unmotivated to go out and had to force myself to do so. I was not the happy fit person who loved martial arts anymore. Life went on, I still had to work. I work around people with mental health issues and had to hold it together and help them while I was broken myself. Months later I had enough and went to see a psychologist who diagnosed me with PTSD.

After getting help from a specialist and my GP I am now 8 months pregnant. I am looking forward to meeting my daughter in a couple of months, but my current pregnancy has not been anxiety free, I have to keep reminding myself things are going well and try not to worry too much about things going bad or being too good to be true. The memory of my children who did not make it into the world has not gone away and I will always remember them, when each milestone comes up but they will always be with me and not forgotten.  


If you require support after reading this blog, please contact Sands on 13000 72637

Michelle Peruzzi

I have a Bachelor of Applied Social Science in Counselling, and currently work as a mental health advocate. I am studying for a Graduate Diploma in Psychological Science. I am passionate about helping others, love martial arts and am very active within this community. In my spare time I like to do puzzles, walk my two dogs and spend time with friends and family. I have a loving and supportive partner who I have been with for 10 years.