I feel my own heart breaking into pieces every time I try and imagine an outcome for Evie. None of us have a crystal ball and we are now faced with making the biggest decision of our lives solely based on information given to us by the professionals involved in Evie’s care, experiences from other families that have been through something similar, and of course our own gut feeling for what’s right for our daughter. I have never, and hopefully never again have to make such an impossible decision.
Boston Children’s Hospital have got back to us with the second opinion I started looking for back in December before Evie got sick and ended up on death’s door in ICU. Since bringing her home and seeing how much she has improved, I continued my pursuit and now we have been offered something that was not in our reach a week ago. This has confronted us with an immense decision. One that we cannot simply make overnight. There will be multiple steps that will guide us towards the decision we ultimately end up making.
After following a journey recently on Instagram that very much hit close to home, although there was a few differing factors, it made me reconsider my whole view on the path we have taken so far. This family did not know their unborn daughter would have a severe heart defect until she became unwell shortly after coming home. Their local hospital were unwilling to offer surgery so her family sent out a plea all across social media to try and find a surgeon who would take on their case. The couldn’t rest until they found someone and thankfully, they did and their daughter was able to have the life saving surgery. Their journey is far from over but if they did not fight, they would have been sent down the same route as us with palliation.
I keep trying to imagine a scenario where everything I know about Evie’s heart up until now is completely erased. I wake up in the morning and someone tells me – your daughter is almost 8 months old, she has an extremely complex set of heart defects that ultimately, with time, will work against her. You might not have long left with her, so here are your options:
Dublin are offering monitoring and a ‘wait and see’ approach with palliative care input as they think that surgery will not work for Evie/the risks involved in offering surgery will negatively outweigh the outcome of said surgery. This means caring for your daughter at home with palliative guidance and symptom control until she dies, you can only hope, peacefully in your arms. She will continue to know only your love and warmth. It sounds like the kindest route but it will not save her.
Your other option is to travel to Boston, USA where they are willing to perform a few minor procedures in order to assess Evie’s heart and hopefully offer surgery that could change your life forever. There are huge risks involved as with any type of massive surgery, but the glimmer of hope is there that this could work. It means uprooting your family bubble and literally putting your daughter’s life in someone else’s hands but – the glimmer of hope is there.
“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –Emily Dickinson
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
Our most important goal since we found out about Evie’s heart condition, is that we would always fight for what we felt was right for her quality of life – not quantity. When Evie was sick and spent 3 weeks in ICU on non-invasive breathing support, we reinforced this goal ten-fold in our minds. We even requested a “do not resuscitate” order for our own daughter, knowing that any invasive intervention would likely end in extreme trauma for Evie and us, and a very strong unlikelihood of her actually surviving.
When I started looking for a second opinion, I knew it was because as a mother, I couldn’t rest until I had exhausted options. For my daughter, that is the least thing I could do. I am a strong believer in doing the right thing in order for someone to live their life in comfort. When I worked as a nurse, I gravitated towards patients who were end of life or palliative. Your main goal there is to provide comfort, support and symptom management to achieve a peaceful death. There is nothing wrong with death, it is of course, a natural and necessary part of life. However, when it’s your baby girl who has so much time ahead of her, and she’s been given the opportunity to have that extended your knee jerk reaction is to jump on that opportunity.
All Evie has ever felt is love, from before she was even born. Ross and I are her entire world and in her short time on this earth (minus her 4 week hospital stay) she has only ever felt love, warmth, protection and peace. She deserves all of that and more. Taking Boston up on their offer would completely upturn this safe bubble we have created.
But. There is always a but.
But, where there is life, there is hope. Evie has shown us her strength more times than I have ever seen someone fight for something they want. Evie wants to live, she wants to be here. I just don’t know which decision will help her achieve that more. I can see her getting stronger every day, needing less supplemental oxygen, learning to eat solids, sitting up more and more independently, engaging and responding more to us. I can also see every minute of the day how much her heart condition affects her. Her skin tone, her pallor, how much she needs to sleep, how little stamina she has to participate in any kind of activity for over a few minutes without tiring, how little volume she can take per feed and how slow her weight gain can be at times, how she gets so worked up when she’s struggling with her breathing and how much it knocks her if she cries for an extended amount of time, every time we administer her diuretic medications in order to offload extra fluid so it takes the pressure of her heart.
I also can’t help but feel the sting when I see other children whose parents have been told the devastating news that their child has a severe heart defect, but have also been told that there’s a fix. Surgery is an option, your child will recover and their life will dramatically improve after this surgery. I feel immensely grateful that those families have been given that opportunity, no doubts and no questions asked. So how strange it feels for me to view them as the unlucky ones, and us as the lucky ones. They are also facing probably the scariest time of their life and handing their baby over to a team of surgeons not knowing if they’ll achieve the outcome they wish for. I so badly want that for us and Evie, and at the exact same time that’s the absolute last thing I want.
As we have always done with our care for Evie, we will approach this new chapter head on with love and grace in our hearts and Evie’s health and happiness at the forefront of any decision we make. It won’t be easy but I can only hope that one day in our future I’ll be able to read back on this and say “you know what, we had this all along”. Just like I when I read back on my Instagram posts from before Evie was born when we didn’t know if we’d even get to see her open those big blue eyes – look how far we’ve gotten since then.