On the 2nd of March this year I came home from a work trip away to the best news ever! We were pregnant, Teegs and I had only just started trying and didn’t expect things to happen this fast. I was absolutely over the moon and nervous at the same time for what was in front of us. I remember almost feeling bad that this had happened so quick and easy as a lot of people around us were struggling to conceive.. how that would change. 

We live 3 hours away from a major hospital and a lot of medical services including scans. On the 22nd of March, we had our dating scan. Seeing our little bub on the screen was the most amazing feeling and you convince yourself you can see the shape of them even though it is the tiniest little thing. I remember at this scan having a feeling of “this is getting real”. It was so cool seeing the little heart beat and being told everything was okay. We later had our 12 week scan where again we were told everything was fine and there were no issues. 

On the 29th of April while away on another work trip, I received one of the worst phone calls ever. Teegs told me the Non-invasive Prenatal Testing (NIPT) results had come back with some abnormalities. The doctor told us we were having a girl and there was a 95% chance she had Turner Syndrome. It is a genetic syndrome relating to the X chromosomes and can vary in severity. The doctor also mentioned a small cyst on her brain however was more focused on the other test. I came home straight away to be there for Teegs and to try and make sense of this news. I cried on and off during the 6 hour drive home just thinking about would this could mean for our little girl. We both spent the next few days researching as much as we could about Turner Syndrome and thinking about the possibilities of what our little girl’s life would look like. A few days later we spoke with a genetic counsellor who told us the 95% chance was very wrong and it was more like a 40% chance or possibly lower. After hearing this news we started to look at things positively and thought that everything might be ok with her after all. We had to book in for a scan at the Hospital and also an amniocentesis to test for genetic issues.

On the 13th of May Teegs had the scan and amniocentesis at the Hospital. During the scan they checked for the all the signs of Turner Syndrome and everything looked good until they got to her brain. I was watching their face and could immediately tell something was up, I got a sick feeling in my stomach as I held Teegs’ hand. They told us there appeared to be some fluid on her brain but they weren’t sure. Some doctors came into the room and looked at the scan which I assumed was not a good sign. After the amnio the doctors took us into a small room to have a chat. They told us there was some fluid on the brain however it might not be anything and they had no marker at that stage to measure it against. They told us they would send the amnio off and be in touch with the results. Two (2) weeks later we got a phone call saying the amnio had come back and she was genetically fine. 

We were booked in for another scan on the 4th of June to look at the fluid further. We went in for the scan and I remember being extremely nervous. While they were doing the scan around the brain their face changed again and they took some time to look at it very closely. They again went and got a doctor to look at the scans and they explained to us there was quite a bit of fluid on the brain. I remember hearing this and starting to tear up but wanting to stay strong for Teegs. After the scan we went into the same room as last time with two doctors. They told us the amount of fluid on our girls brain was severe and this would most likely mean there is a significant brain abnormality. They also told us there appeared to be no corpus collosum which as I understand it, is a band of nerves that connect the 2 sides of the brain. They said one of these on their own was bad so the 2 combined meant the outlook for our girl was not good at all. They said the severity of this could likely result in conditions like cerebral palsy or spina bifida. They started to talk about terminating the pregnancy then and there and they explained to us the termination meant Teegs would need to give birth as she was too far along to terminate medically. I remember at this stage we both were in tears and couldn’t even think straight. They could see how this had affected us and gave us some time to go away and try and process the news. We walked away and we were both numb, not knowing what to feel. We went back to the doctors telling them we were not ready to make that decision, they explained we could speak to both a genetic specialist and a neurologist after they had seen the scans. I remember the next few days just feeling completely numb, not wanting to do anything or talk to anyone. We went to the shops and did “normal” things but things were far from normal. A few days later we spoke with a genetic specialist who confirmed what the doctors had told us and that there was a high likelihood this was linked to a genetic issue. 

The next week when back home we had a phone appointment with a neurologist. I am someone that works on facts and best/worst case scenarios based on my job so I asked direct questions about similar cases he has seen. He told us that he had only seen two cases this severe in the past where people had decided not to terminate. One child died during birth and the other lived for about a year however was in hospital the majority of the time before passing away. He told us it was extremely unlikely our little girl would make it to full term. I think we both realised during this conversation that we were going to terminate the pregnancy. All we wanted was the best life for our little girl and this wasn’t it. We had to think about everything this would affect, where we lived, our careers, our future, everything. One of the main things I thought about was how this would affect any future children or the ability to have any other children based on the amount of medical and our own attention this would take. It wasn’t fair for this little girl to live a life like this, if she was to live at all. After the appointment we had the toughest conversation we have ever had, we decided we were going to terminate the pregnancy based on all the information we had available to us. In a way for me I felt like we had already processed this along the way and probably deep down knew this was always the way it was heading, as hard as it was to accept. The next day we had a conversation with our specialist from the Hospital and told her our decision, she was very good about it and booked us in less than a week later. The next few days were hard I think I just went into auto pilot going through the motions but not really feeling a lot. I remember during those days Teegs telling me about flutters she was feeling from the baby. On the Thursday night we were both sitting on the couch when Teegs said she felt a small kick. I felt her stomach too and immediately felt a kick, it was the most amazing thing. 

On the 16th of June we drove down to the Hospital once again. I don’t know how to explain this drive it was emotional, sombre and had a lot of tears from both of us. The previous drives had been hard and I felt myself staring into the distance a lot but this was something completely different. We arrived at the hospital and went to our ward. We were taken into our room and at this point I was just going through things in my head about what Teegs needed, I just had to do everything for her. This is a weird thing, I’m not one for superstitions or anything but when we walked into our room the clock on the wall had stopped just after 8.30pm, we didn’t think much at the time, but it would turn out to be significant. We had some dinner that night and tried to make ourselves as comfortable as possible, which wasn’t easy. Every few hours a nurse would come in to check on Teegs and do her obs. I remember machines beeping all night it was hard to get some sleep but I managed to get some. Every time I started to think I was uncomfortable or anything I would just think of Teegs and what she must be feeling. We woke up in the morning and I got us some coffees and breaky. Shortly after breakfast the doctors came and saw us and they gave Teegs the first dose of medication to start labour. I remember thinking at this stage how tough this day was going to be for Teegs so I had to think of what we could do to pass the time as we had been told this might happen in the one day. I remember saying to Teegs let’s take a guess on what time she would be born, I said about 6.00pm and Teegs said I reckon about 8.30pm because that’s the time the clock stopped on. Labour started about 10.30am and our little girl, Poppy Joy was born about 8.40pm very close to the time the clock had previously stopped. Watching Teegs go through labour was incredible and so tough at the same time. She did an absolutely amazing job and I am in awe of how well she did. I would find myself getting excited about the birth but then would remind myself of the actual situation. 

When Poppy was born the midwife immediately handed her to me to make sure everything was ok with Teegs. I always knew I wanted to hold her but I wasn’t prepared for it. The only way I can describe it is it was the most amazing yet heartbreaking feeling holding our little girl thinking we did this she is part of us but then the reality hits, she is not alive. While holding her I cried uncontrollably more than I ever have before. The midwife took her away and cleaned her up. A short time later she brought her back for us so we could spend time with her. We shared some beautiful memories with our little girl. I remember saying to Poppy sorry we couldn’t give you the life we wanted for you, this absolutely broke me. After a while we noticed Poppy started to deteriorate so we placed her back in the cuddle cot. We are so grateful for the cuddle cot, allowing us to spend time with our little girl. Leaving the hospital and driving home was such a surreal feeling I really don’t remember it that well. 

When we got home we were absolutely broken. I started to switch back into auto pilot and my only thought was be there for Teegs, anything she needs. I experienced this too but Teegs went through it physically and the bond with a child and mother is stronger before they’re born, they are the ones carrying them. In the coming days came decisions we never thought we would have to make. We decided we would have Poppy cremated and bring her ashes home with us. We had a trip to Sydney again for a final viewing of Poppy before she was cremated. We then drove back home again this time with our daughter’s ashes in a bag in the back of Teddy bear. How is this happening, we are supposed to be thinking about everything we have to buy and prepare for, it’s not fair. 

The time that followed was bloody tough to say the least. Days and days of crying, not wanting to talk to anyone or do anything. We had to realise there is no set way to deal with this you just have to go with it feel the emotions and do whatever you can even if that was getting some sleep, eating a few meals and drinking water. I just had to be there for Teegs in every way I could, I needed to provide her with love and support. When I was on my own I would realise I have deal with things myself, I find this hard I always put Teegs first. We have reached out the Stillbirth Foundation Australia and Bears of Hope who have been amazing in so many ways. We talk to psychologists about Poppy, we share our story and do everything we can to try and navigate our way through this. I used to think when will things go back to normal but this is it, this is our new normal. Poppy will always be with us, we think about her everyday she will always be our first child and future children will know of her. You are not alone with this, reach out, talk about it do whatever you need to do. This is hopefully the worst thing we will ever have to through and the biggest roller coaster of emotions. We’re here for anyone else that unfortunately has to go through this.