Leading up to Hugo’s birth was an interesting time. Looking back on it now the time seems to have moved so quickly. We got the diagnosis just shy of 35 weeks gestation. Marian and David arrived in Brisbane a week later to prepare for what was to come. We had many plans for this time prior to Hugo’s diagnosis and despite our heavy hearts we still managed to enjoy ourselves most of the time. We had numerous appointments with specialists, doctors, neonatologist and midwives. When we found out what was to come our care had been changed from mainstream antenatal care to specialist care through the Mater Maternal Fetal Medicine Unit. The midwife that was overseeing our care was extraordinary. At every appointment she went above and beyond to ensure we knew what was going on and to plan our care so everyone was happy. I was hoping for a VBAC this time around but the factors were stacked against me. Hugo’s head was off the charts in terms of size (something we later learned was atrributed to his condition) and the amount of amniotic fluid present meant induction of labour was out of the question so I consented to the caesarean. I’m positive planning the birth of Hugo gave our wonderful midwife countless migraines, but she never complained.
When we had our appointment with the surrogacy liaison midwife way back in the beginning of our pregnancy we were told that if we were to have a planned caesarean then both Marian and David and a photographer could be present in the room, in fact this is stipulated in the written hospital policy. Suddenly we were being told then I could only have one person in the room and absolutely no photographer. This was extremely distressing to us as it wasn’t explain why they had changed their minds and we still didn’t know at this stage if Hugo would survive past birth. I didn’t want Marian or David to possibly miss the only moment their child was alive simply because the powers that be changed their minds. Luckily all it took was a quick email to the patient rep to get everything sorted and on the day, despite a little bit of fuss kicked up by the anesthesiologist we had Marian, David, Simon and our beautiful photographer Emma all present during the caesarean. The day of Hugo’s birth came quickly. The night before we all got together for dinner at our place and when Marian and David left I had a moment of abject fear about what was to come the next day. Would the baby live past birth? How long for? What if they’re all wrong and the baby is completely fine? Simon was very good at calming me and reminding me to take things a moment at a time. I slept remarkably well that night and we all turned up to the hospital the next morning with more excitement than fear.
The caesarean was incredibly uncomfortable to begin with. Due to the amount of amniotic fluid I was carrying, lying on my back was not comfortable in the slightest. When they started to drain the fluid it felt like a weight was being lifted off my chest and I immediately started feeling more comfortable. Turns out Hugo was born with a whopping 7.5ltrs of amniotic fluid. That combined with Hugo’s weight and the placenta, I lost around 12kgs in that moment! The only indication that Hugo had been born was Marian’s squeal that rang out across the operating theatre. Because Hugo was born in poor condition he was quickly whisked away before I got to actually see him. I had to ask Marian if it was a boy or girl! LOL. After he was born Marian and David were taken to the waiting room while the neonatal team worked on Hugo and the doctors finished my caesarean. The room Hugo was taken to was just outside the theatre so I could hear that they were working on him for quiet a long time. Just before I was finished in theatre, the lovely midwife who delivered Hugo came to tell me that he needed full resuscitation. I knew then that there was no way the doctors had his diagnosis wrong, a healthy baby doesn’t require full CPR and multiple doses of adrenaline to get it’s little body working.
I spent some time in recovery but eventually was taken to the nursery where I was able to meet the little guy and see Marian and David again. Before I even saw Hugo while I was being wheeled into NICU I saw Marian’s face. She was absolutely beaming! It had seemed almost forever since I had seen so much joy on her face and I was so happy that in that moment, all Marian felt was happiness and love. Hugo was ventilated and asleep. When I held his hand and started speaking to him he opened his eyes and blinked. I couldn’t get over how much he looked like both Marian and David and how much hair he had! When I took his hand I noticed his fingers were contractured which had been caused by his lack of movement. I spent a little time with Hugo and his parents before I went back to my room to get some rest. I was feeling emotionally strong – so happy Hugo was born and Marian and David were finally parents. I managed to get a good sleep that evening and woke dying to have a shower. I let Marian and David spend the morning alone with Hugo. They were constantly texting and visited the night before and that morning, I could feel the love they had for their son in every word they said and the looks on their faces.
The next day after lunch I went back down to the nursery to meet Hugo again and see Marian hold him for the first time. This was a defining moment for me during Hugo’s short life. Since the beginning of the journey I anticipated when Marian would hold her tiny baby for the first time immediately after birth. Smell his baby smell, feel his soft baby skin and hear the gorgeous baby noises he makes. This fantasy had been altered but it was still a life changing experience for me. As soon as Marian felt Hugo’s skin on her own the look on her face said it all. In that moment she was pure love and joy, I have never seen anyone radiate it more than her in that moment. For me I couldn’t stop the tears. That was the moment that I learned that my heart could be completely broken and yet so full of love at the same time. I was so heart broken because this was one of the only ‘first’ moments Marian would have with Hugo. Most mothers get their first hold or their baby…their first smile……their first words. For Marian, I knew her firsts with Hugo were limited and my heart broke that this had been taken from her. My heart was also bursting with love because you can’t look at a new mother in that moment and not physically feel the love she has for her much wanted baby radiating around the room. There were people everywhere in the room at the time – nurses, other parents and doctors, but it may has well only been the four of us; David, Marian, Hugo and myself, because this was our moment. I knew then that every tear I had cried, all the pain I had endured and every bit of heartbreak I had felt leading up to Hugo’s birth and what I knew I would feel after he passed away was completely worth it. I would do it all again in a heartbeat just to have that moment again. For those of you who haven’t seen the beautiful video our amazing photographer put together of Hugo’s first two days, including Marian’s first cuddle you can see it here.
From then on I was scared for what was to come. The next day the neonatal team called a family meeting with Marian, David and myself. I was already feeling emotionally fragile and I so wanted to keep it together and be strong in that time but I fell in a heap. They briefly discussed Hugo’s condition; most definitely something genetic, they believed it was some form of syndrome. It was clear to the team looking after Hugo that his time was limited and we needed to discuss what forms of resuscitation we were comfortable with. I didn’t know what to expect during this appointment, but it definitely wasn’t the signing of a do not resuscitate plan. I couldn’t fathom that we were all sitting around discussing this beautiful little boy in terms of how long we would extend his life. It went against every single fibre of me as a parent and I wanted to scream and rail against the wrongness of the situation. You do everything to nurture and protect your children, it seemed like a horrible surreal dream to be discussing what we did and did not agree on in terms of saving Hugo’s life. I knew why we were having the discussion; above all else, none of us wanted Hugo to suffer, but it still felt wrong. During the meeting I was awed at how strong Marian and David were, I envied them in that moment. I wanted to be like that, to be able to hold it together despite my internal struggles and calmly discuss Hugo’s treatment and not feel like a raving lunatic, but I couldn’t force myself to hold it together, so I sobbed while Marian held me for as long as it was needed for me to pull myself back together. I wanted to be strong for them and for Hugo because I didn’t want any of them to worry about me, but in the end the grace they both conducted themselves with during Hugo’s days is what propped me up and pulled me through. I went home that evening after visiting Hugo again. I wasn’t sure if I would ever see Hugo again when I left the hospital, but I knew that I needed to be at home and let David and Marian cherish ever moment with Hugo without me constantly hanging around. This was their time and I was more than happy to let them have it.
The next morning I woke around 4am. Usually the first thing I do when I wake is look at my phone, but for some reason that morning I didn’t. I got out of bed and did a few things around the house and some work on the computer. When I got back into bed at 6am I looked at my phone and noticed three missed calls from the nursery at 4am and a text from Marian to let me know that Hugo was unwell and they had been called into hospital because he appeared to be deteriorating. I was actually grateful that I had missed the phone call. I decided to stay home unless Marian and David wanted me to come in. I didn’t feel the need to be there in that time. He ended up stablising, but I knew without even asking Marian that they had decided it was almost time to say goodbye to the gorgeous little man. His body was clearly struggling and I knew they didn’t want to see him continue to struggle, especially as there was no way for him to show us if he was in pain. He couldn’t cry or move, so we had to guess how he was feeling by watching his vital signs.
Friday came and I knew this was the day. Marian and David had decided to withdraw Hugo’s life support. They asked if I would like to go in and have a cuddle with him and although I didn’t know if I felt strong enough, I knew I would regret it if I didn’t. Holding Hugo was amazing, he had the strongest heartbeat and feeling it against me made up for all the times he didn’t move while I was pregnant. I touched his hair, his face and I held his hands to breathe in every part of him and memorise how he felt in my arms, how he smelled and how full of life he was even through his limitations. I held him as long as I could until I was too sore to continue sitting there. Then Simon and I said our goodbyes and went home. I knew I wasn’t strong enough to be there when his ventilation was removed and I said a little thanks to the universe that Marian and David’s strength would see Hugo rest peacefully.
The next few days are a bit of a blur. Telling the girls was extremely difficult though they have been incredible during this time and have talked to us when they’re feeling down. Since then there has been lots of tears and a fair amount of alcohol. I read something someone had written about losing his wife that pretty much sums up how I feel; losing someone you love is sort of like never being able to see the colour blue again. You can go on with your life and even be happy again, but the world looks permanently different and you can never forget what it used to look like. This is exactly how I feel; I seem to travel along with a low level of sadness – the world isn’t as vibrant as it once was. 90% of the time I am perfectly happy and look back on my time with Hugo and the time since and I am at peace with it all, but the other 10% of the time I fall in a heap and don’t want to do anything, talk to anyone or leave the house.
Marian and David stayed for a month after Hugo’s birth and it was nice to live in our little bubble of grief during that time. We had each other to talk to and we supported each other through those first few weeks but when they went home it felt like I’d taken two step back in my progress. I was suddenly alone during my days and I found some social situations awkward. At school one day, one of Addison’s friends mums saw me and I could see what she was thinking written on her face as clear as day…..’oh shit – what do I say to her? Do I talk about the baby or pretend it didn’t happen?’ instead she said an awkward hello and turned to make conversation with someone else. That woman unintentionally made me feel like pariah and made me want to hide away all the more. I get it – people don’t know what to say or how to act around you when you’re going through something like this. I have learned so much from this process and now know what to, and what not to do and say when people are grieving. Platitudes do not help in any way shape or form….don’t people…just don’t! The best condolences I’ve had are the many hugs gifted and the patient people who have let me share Hugo’s story. I absolutely love talking about him on those days when I’m strong. I want to share his story with the world; the story of a little boy who never truly knew the impact he made on the world. The story of a little boy who came into this world through the love and support of a community and was celebrated each day he was alive. The unexpected gifts he has given me as a result of his short life; a greater appreciation for all the amazing people in my life, a new form of strength that I never would have gained any other way, and a deeper level of the meaning of love for him and his amazing parents, not to mention my own husband and family. This is Hugo’s story and his legacy and yes it was filled with sorrow, but it was also filled with wonder and amazement and that’s something I want to share.
I know my experiences since Marian has gone home are very different to her own but I suppose this is where it would naturally split since we left our bubble. Marian had always planned on taking a baby home to Adelaide and at that point I would go about my life again with work and family. This is where my grief is complicated, because I am both directly and indirectly involved and sometimes this leaves me feeling a little lost. I am fully aware that Marian had planned this time as a time to be settling into a life as a new mum, working around a sleep, feed cycle and I know going home made her acutely aware how different her reality turned out, but I will let Marian share her feelings on this when and if she is ever ready. At the moment I am focusing on getting healthy again and spending quality time with my family before going back to work in January and most days at the moment are good days. I still wish that I was at the part where I’m ok with everything that happened – that moment when just enough time has passed and you can go about your day as if the worst hasn’t just occurred, but I’m not there yet…..I’m not there yet, but I’m right where I should be and for now that’s ok.