On the 25th June we took the kids out of school and kinder and as a family trooped to the 20 week scan ready to find out what we were having. Predictably Jack was bored within 10 minutes and Zachary distraught – for some reason me sitting in the scan chair (or dentist chair) completely terrifies him. He spent the scan holding my hand. We found out we were having a boy and the kids promptly started choosing names – mostly Santa and Rudolph. It wasn’t until the very end we had the slightest inkling that anything was wrong. Looking back we both noticed how many images of the heart he was taking but between the kids and the excitement of a new boy we just didn’t put two and two together. We took our notes upstairs and while the kids played met with a fetal obstetrician. She told us our little boy had HLHS – Hypoplastic Left Heart Syndrome – which basically means the entire left side of his heart had not formed. It’s one of the rarest and a severe birth defects that can affect a baby’s heart and about 8 babies are born with it at Melbourne’s Royal Hospital each year. Since Melbourne and Sydney are the only hospitals equipped to deal with this defect gives you a idea of how many babies are born with it in Australia each year. To say the bottom dropped out of our world does not even begin to describe the feeling. I just assumed if I made it to 12 weeks I was home safe. The kids didn’t understand why we were crying or even after we explained what was really wrong but Abi sat behind me in the car rubbing my arm. We drove home in a complete daze just trying to understand how this could actually be happening.
The Dr called us later in the afternoon to say she had booked us into the Royal Women’s Hospital for a more in depth scan on Tuesday. Hopefully they could give us more definite answers but she was quick to point out it wasn’t looking good, we shouldn’t be surprised that this might end in termination.
We spent 4 days in no man’s land, getting the kids to their last days of school, telling who we needed to and spending a lot of nights lying awake trying to work our way out of it. Google is both a friend and a foe. I read everything, websites from families going through it, messages from families who choose to terminate and those who lost their kids during the surgeries. By Monday I knew if we went ahead there was a 75% chance Archie would make it to 5 years old. To do that he would face 3 open heart surgeries, the first at 2 days old, the second at 3 months and the last at about 3 years. He would probably be on medication for the rest of his life and there were no guarantees past the early thirties as there are just no survivors past that age at the moment.
We arrived for our second scan, I saw him kick out and felt the little thump inside me he wiggled and shuffled on the scan, refusing to sit still for too long. Emily, the head of the unit and another Dr quietly discussed what they saw, hunting for veins and arteries to try and work out what was there and what was missing. I stopped listening and just watched the screen, seeing him push his feet up against the scan, wave his hands and occasionally wriggle of the edge of the screen itself. After an hour they decided they had enough and we went next door for a chat. Despite desperately hoping someone had made a mistake no one had. The Dr explained what the heart was meant to look like and what our little man had. He explained the surgeries, the potential complications. They would have to rejig his heart so his right side would have to push blood from his heart to the lungs and then straight around the entire body. It would have to do the job of both sides.
He said I would need to be in Melbourne from 36 weeks and Archie would not be able to leave until after his second surgery so I would be living in Melbourne for around 5 months, quite possibly with Archie in the hospital for that entire time, and this was probably a conservative estimate. Half of the children who face these surgeries don’t manage to make it home before the second surgeries, the likelihood of possible complications is neither short nor unlikely and since we lived so far away from Melbourne it just would not be feasible. Even as he was talking about it I kept thinking about all the things I would be missing; Abi’s move to second grade, Jack starting school, Zachary beginning his swimming lessons. All the little things that happen in their lives that might be just be a moment but are still a memory I didn’t want to not be a part of.
At some point he may need a heart transplant, and this would give him 15 years before he would need another heart with the likelihood of getting one even smaller then getting the first. But the children that do make it through the third surgery mostly do have a good quality of life, almost entirely the same as any other child. Maybe a little more susceptible to illnesses, more likely to be sicker and for longer but on the whole just like any other child. But the right side of the heart is not built to do the job it’s doing so as they get older they could only assume eventually it would give out. Maybe he was just trying to be brutally honest, trying to put out the worst case scenario for us so we would be prepared if we choose that path. It just seemed like a never ending supply of hurdles for us and our tiny little boy.
Jamie and I went for a walk about the Vic Market before the clinic at 2pm, pretending for a little while that everything was alright and joking about wearing matching onesies on the plane back to the UK, or even better dressing in onesies as characters from Winnie the Pooh. I am still not sure he meant that entirely as a joke. We were sitting down for a lunch and I opened my mouth to say something and the words just popped out, ‘I just don’t see how we can do this.’ I thought it would be a relief to finally admit them, I know they had been swirling around my head for days as I veered from one decision to another but it wasn’t a relief. I just felt this immense sense of panic, like I had just given up and now he would be ripped away from me. I knew Jamie had been thinking the same things, I could see it on his face. Looking back now I don’t have a regret about the decision by that I mean I don’t think if I went back I would do anything differently, I regret a million things, never knowing what he would be like, what he would be as he grew up, who he would look like, how he would fit into our little family. I have imagined a thousand different moments in the future that he was a part of. 4 sets of school uniform to buy, taking my boys to football and then having to wash all those mud covered sports clothes, our trip around Australia with 4 noisy kids in the back, constantly tripping over shoes by the front door – I am already doing this but I am guessing it would be worse with an extra boy. Even just the immediate future, wondering how we would fly to the UK with Zachary stuck on my lap and even worse on the way back when I was even bigger, sharing pregnancy stories with my best friend and hearing her news about her new baby with mine just around the corner. It feels like I have to rewrite my future, and I know there will be so many moments harder than the others because I would almost see him in them as if they had already happened.
So we went back to the hospital and waited to be seen, to tell them what we had decided. They were the nicest people, told us we could take our time, we didn’t have to make a decision now but once we had made it was done. We’d spent a week waiting to get to here, I wasn’t sure how much more just waiting I could take. We saw a shrink, a Dr for a prescription and then the social worker. Anne was probably the best and worst person to see last. We had both spent most of the day breaking down into tears at one time or another, I wasn’t sure how it was possible to have any more but apparently I was wrong. She just had a gift for knowing every fear I had and putting it to rest. She said that there would be times when everything seemed alright before you found yourself balling in the post office queue or at some inexplicable date that only meant something only for you. That this grief was going to take time to go and bottling up would only make it worse. We needed to be honest with the kids and explain otherwise they would only fill in the gaps themselves – Abi was deeply upset at one point because Daddy ‘was going to burn’ her brother. But most of all that we were making the right decision for us and our family and I think that was probably the bit I needed most of all. I know there will be people out there who think we made the wrong choice and that they would have done something different, that we took an easy route but no one has the right to that opinion. Until you have stood in our shoes; been pregnant and been told the news we were told, had 3 kids waiting at home for their mother, lived 4 hours from the city and all the millions of other things that made up our choice you don’t have a right to any opinion about our decision. She was so forceful on that and I kept thinking no one I knew would ever actually say the words even if they thought them but I think I needed to hear them anyway. Even thinking of just Archie I know without a doubt I could not put him through the things I would have to to give him half a chance. My babies are meant to come home after birth, spend their nights tucked into bed beside me warm and snug, alternately poked and squished by their older brothers and sister, they are meant to be fed on demand and get that glazed drunk look when they stuff themselves to bursting and then pass out, milk dribbling out of their little mouths. I don’t want the alternative for Archie. I don’t want months in a hospital, tubes and surgeries, infections and complications, feeding tubes and a never ending medicine supply. For everything he might ever know as a child is fear, fear that the next person coming near him will jab yet another needle in him, fear of being left in yet another hospital room even for a moment. This fear isn’t fear a child should ever know. I’d rather he went from warm, snug and safe inside me to closing his eyes and passing away and never knowing life could be anything but that. I guess when it comes to it that is the only choice we had to make.
On July 3rd Jamie and I left the kids with Chris and Robbie and heading back to the Royal Woman’s Hospital to be induced. As with all hospital things everything takes time but Archie arrived in a rush at 5:38pm as the midwife was still trying to get her gloves on. He was utterly perfect, with Jack’s nose and Zachary’s mouth. He was only 390g and 26cms long with tiny fingernails and perfect little ears. He was born alive and died peacefully in his Daddy’s arms a little time later. We spent the night telling stories about the kids and things we remembered about their births and in the morning Archie was blessed and had a name giving by a pastoral worker at the hospital. They discharged us and we left our little boy in their care. Now we are home and having to do a million things I never imagined we would, like find a funeral director and work out where we scatter our boy’s ashes.
In all of this though we have never felt more love and support from our family and friends. The constant stream of messages has been a lifeline, reminding us of everything we have to be grateful for and how many people are grieving with us. It has been good to be reminded that no matter what our youngest boy will never be forgotten.