So, it has been 6 weeks since my darling Thomasina died. In the past year she was a huge part of my life. In the last 6 weeks she has been in my thoughts for basically every waking moment.
I think I will be talking a lot about her here - so as an introduction here is the eulogy/words of farewell I gave at her funeral
words of farewell
We always knew that we might not have Thomasina with us for long, but we never expected that it would be quite this short.
Our family could have been complete with just our two beautiful crzay red-headed boys - life was good: Remus had started school, Raff was loving creche, work was going well, the crazy days of Board’s had come to an abrupt halt, plans for the major renovations to Brougham St were well underway. But something else was needed, and we were blessed with a new little person being on the way. Debilitating morning sickness coupled with whooping cough didn’t make me feel too blessed in those early weeks and months of pregnancy so making it as far as the 20 week scan, coupled with coming out of the fog of sickness felt good
Felt good until our worlds came crashing down with the news during that scan on Melbourne Cup Eve last year when I first head the words “something doesn’t look right with the heart”.
And so began 18 weeks of medical assessments, lots of tears, not much sleep and too much “asking Mr Google”.
I guess now we are living the nightmare we imagined at that time.
Thomasina throughout her short life, right to the very end, looked so well it is sometimes a hard to remember that she was chronically ill and her condition an extremely complicated one: this was no baby just with a little hole in the heart.
Thomasina’s actual condition included:
right atrial isomerism
AVSD - atrioventicular septal defect
DORV - double outlet right ventricle
transpositon of great vessels
bilateral SVC - bilaterial superior venal cava
Or in the way it would be described each day during rounds at the Royal Children’s Hospital - she had a complex cardiac condition. In addition she is asplenic and had a Ladds procedure on her bowel to prevent a malrotation of the bowel
In common language, Thomasina was what would have been known as a blue baby 20 years ago, not that long ago her condition would have been undetected prior to birth and highly likely she would have died within a few days of birth before the problem was discovered.
We are so lucky that our journey with that complicated anatomy was guided by Thomasina’s wonderful cardiologist Lance Fong with his careful consideration....and his great hope that Thomasina’s heart one day could be repaired.
There was some hope that upon birth she may have lasted 3 months before her first surgery but as we began the constant watch of oxygen saturation levels it became clear that this was not going to be the case and at just over 72 hours she made the trip from Monash to Parkville to undergo her first surgery. As parochial as I may be regarding Monash, must admit it was much nicer to be in Parkville - closer to Princes Park, Brunetti’s and Black Orange.
Words cannot describe the sense of relief of arriving at the wonderful new Royal Children’s Hospital. There are a couple of people here today who were part of a team who sat around a cabinet table that made the commitment to build that hospital. The worth of that building to the people of Victoria should never be underestimated.
I know a couple of things about building hospitals and their design. To experience the difference that a well designed hospital can have is another thing all together. I dread to think how different our experience would have been without those facilities - the natural light, the non-clinical feel, how comfortable it was for Remus and Raff, how good those green couches are.
Thomasina’s first surgery in which she had a modified BT shunt inserted to redirect blood flow around her heart until her heart could be repaired or permanent diversions created took place when she was 5 days old. I cannot describe the stress of kissing goodbye your 5 day old baby as they head into 5 hours of surgery. But as her wonderful surgeon Yves D’udokem told us the night of that surgery he “did good” and her journey of recovery began. It was 4 weeks and another 5 trips to theatre including major bowel surgery before we got to take our Tommy home a few days before Easter.
While that time was stressful, we felt like we should be everywhere at once, it was also some of the most magical times in our lives. Having a newborn in hospital meant we had to stop, we had to spend a lot of time sitting around, we had to spend a lot of time in Melbourne - Remus was particularly happy with that.
Still, it was a relief to be home. Yet it was high stress. A good friend of mine who has had decades of caring for a child with chronic illness compared the stress to always being on safari - you are forever wondering whether that crackle is just a harmless leaf you stepped on or is it a tiger about to get you.
Everyday there were lots of crackles, and during the 7 months only a couple of tigers.
For 7 months I lived everyday thinking that what happened in the early hours of last Saturday morning was going to happen that day - that there would be a sudden noise, that Thomasina would arrest and that it would all be over. I know that Remus too worried like that, we have chatted this week about how it is so sad that Thomasina has gone but that no longer are we constantly worrying about her.
Her time with us was full of that stress, full of medical appointments and the hours seemed to go quickly between the times we had to administer her medicine which she hated.
Yet, we had a wonderful time together.
From prior to her birth we were aware of the impact that having a chronically ill child can have on a family - although the warnings it will mean lots of trips to Melbourne had little impact on me, but quite an impact on my credit card!
We worked hard to make sure we minmised those risks; Remus and Rafferty loved spending time at the Royal Chicken’s Hospital and we had lots of adventures during those times. During our times at RCH we had amazing support from Felicity - who would magically appear on the ward each evening and often taking me off to some of Melbourne’s best dining experiences for dinner, although the night we just ate grilld in the car in Gatehouse St would probably be the lowest point!
We made a deliberate decision to try and provide Thomasina with as normal life as possible, this was no sick baby who was closeted away at home - she had a magical life where she met so many people.
Thomasina was lucky enough to spend some time at Books and Blocks, I am so pleased we got to share her with the wonderful educators there. She also spent a lot of time in my office and some time in Pete’s office. She met many of my clients, could pick up on where they were emotionally and react accordingly and she was a constant joy yet distraction in our workspace.
Thomasina also had a social life that many people 20 years older than her would envy - she spent hours in local coffee shops, went to many a meeting and function and even partied hard at 3 Possum parties - including managing to loose her skirt on the way home from the last party.
And of course she managed to do what her mother had always hoped to - to charm Kouta.
Thomasina was so lucky to have her two beautiful red-headed brothers. They fell in love with her instantly, were so kind and loving to her: often Raff a little bit too in her face,
It was so clear that Thomasina got such enjoyment from the crazy antics and love of her brothers. While it is horribly unfair that they have had to suffer losing her, I know that they are better people for knowing her and her short life was so much better because of them.
Just 2 months ago Thomasina had another 12 days in RCH and her second batch of surgery where her original shunt was upgraded to a larger shunt. We had hoped that shunt would work for another 12 to 18 months so she could grow before a decision was made as to whether it was possible to attempt all the replumbing which would see her heart repaired or whether she would undergo a Fontan procedure which would see permanent diversions created.
One of the concerns about which way Thomasina would have gone when that decision came is that there is little data about the long term outcomes of the Fontan procedure - the donations we have suggested today to the Murdoch Institute will go to the work of the Fontan Registry, a project conducted by her wonderful surgeon Yves D’udokem looking at those long term impacts.
Yves description of where he wanted Thomasina to get to was encapsulated in his description that success is where his patients grow up and pay taxes. That became our aim, a nice way of describing that one day Thomasina would be grown up, well enough to be employed. After the last surgery we started to imagine that could be the case. We also had a massive sense of relief that we would have 12 to 18 months before the next surgery.
Since the famous day in the Nursery on Derby Day 2001, Pete and I have been a pretty good team - but the past 12 months have shown us just how far we could take that team. It has been tough: the sadness upon initial diagnosis, juggling where we all were during the times in hospital, living for 7 months with only a couple of occassions where we got to sleep for more than 3 hours at a stretch, the constant stress. But we have done it well, we have had fun, we have done a lot of things. It has been a very special time and I thank Pete for sharing that time, for putting up with me in the less than glorious moments of my tiredness and stress and for never asking how much I spent on Thomasina’s outfits.
Last Saturday morning we did the ultimate thing parents can do for their child as we worked together to breathe life back into our Tommy. Those of you who know me well would not be suprised that my CPR technique was probably a little too rough and enthusiastic but I was giving it one big effort despite knowing that we had always been told that there is nothing that could be done if Thomasina had a collapse or blockage of the shunt or an arrest. Being able to perform CPR when it matters is an amazing opportunity, you don’t need to do a first aid course to learn - I urge all of you to get on the Ambulance Victoria website today and order their 4 steps for life kit where you can learn CPR on a pillow in an afternoon.
In the past week as we have grappled with why Thomasina has been taken and taken so soon, we have realised that she truly did bring something special to people in her short life. It is amazing to see that in a life so short you could have an impact on so many people. Whether it is our family, our friends, the many people she got to know through facebook and twitter, our workmates, my clients so many people have been touched by Thomasina.
We are particularly comforted that Thomasina bought special happiness to two very special people: Nick and Claude.
Clearly she has taught us how fragile life can be but also how strong we can all be. She has taught us that there is joy in the little things, in the special moments. And this week has proven that there is an amazing benefit to living in the community of Bendigo where so many people have supported us. Yep, as the world becomes more global we become more tribal and while the global bit of internet and facebook lightened our journey with Thomasina it is our village that has made her life so special.
To Remus and Rafferty, thank you for being such wonderful big brothers, for being so brave and for loving Tommy-ina so much. While we are sad she is no longer with us, we will have wonderful times together still and I reckon Remus you might even get to go to London sooner than we planned....
My arms ache as I don’t hold my darling girl, a piece of me has been torn away. Now all I can do is borrow the words of another red head in a much different context.
We will never forget you Thomasina - not now, not ever.
