I found out last night that Jessica’s cardiac consultant is retiring at the end of the year. It feels like a rug has been pulled out from underneath my feet. This is the consultant that diagnosed Jessica, the consultant that has been part of our journey from the very start. This is the consultant who spoke to his colleague and gave us hope that in-utero surgery was an option and was there when it took place. This is the consultant who has seen Jessica’s heart, and the changes made by each surgery, through the whole of the journey. And now he will no longer be part of it.
This is not the first time we have lost a key member of Jessica’s cardiac team. Two years ago, the wonderful surgeon who performed her open heart surgeries left to work in the States. The doctor who carried out her in-utero surgery is also now working Stateside, as is the one who completed the second part of her hybrid procedure.
When you have a child with a complex medical condition, you place a huge amount of trust in the medical teams caring for them. These are the people who have your child’s life, quite literally, in their hands. These are the miracle workers, the people you are more grateful to than you could possibly express. These are the people who have saved your child’s life time and time again. To suddenly have to start again and build up that trust with a complete stranger is utterly terrifying.
From the end of this year onwards, almost everything will be new. Jessica will have a new cardiac consultant for her heart check-ups and a completely new surgeon for her next operation. Yes, there will still be some members of the medical team that we know, but these are not the key players. These are not the people in whom we have placed that huge amount of trust.
Jessica’s second open-heart surgery was particularly complex; she was in theatre far long than we had anticipated and I will never forget the anaesthetist coming up to talk to us after the operation was over, telling us just how tricky it had been and that a less-skilled surgeon would not have been able to perform the procedure. At the time, with no inkling that our surgeon had any plans to move on from that unit, we were just so thankful that Jessica’s surgeon was the top surgeon at that unit. Those words haunt me now. Because next time, it will be a new surgeon, a surgeon with perhaps a little less experience, a little less skill. I have no doubt that whoever performs Jessica’s next operation will do his very best, and I am sure that he will be an amazing heart surgeon. But it is still utterly terrifying to have to put that trust in someone who has not operated on my daughter’s heart before.
And then I remember. I remember those early days following diagnosis and the fear. I remember a moment of utter despair, a couple who sat in a hospital chapel and sobbed because they had been told there was virtually no hope. I remember the one thought that got me through: “God is bigger than this.”
Back then, everybody was new. None of the medical team were completely familiar with Jessica’s heart, everyone who operated in those early days was doing so for the first time. But we had a glimmer of hope, and we had faith, and we knew that God was bigger, that somehow God would help us through this. And even though our medical team may be completely changing, God is still the same – today, tomorrow and forever.
To our amazing consultant and the surgeons that have come and gone – we will always be eternally thankful for you and wish you all the very best for your retirement, or new career. We will miss you being a part of Jessica’s journey.
The next steps on the journey will see us getting to know a new consultant and a new surgeon. They might be completely unknown to us, but Jessica will not be completely unknown to them. No doubt they have already been part of the wider team discussing her care. They have four years of medical history for Jessica to draw upon, four years of heart scan images, four years of hospital notes. They will not be coming to Jessica completely unaware. We will have to build up that sense of trust again, but we know that they will do everything they can for Jessica and we will hold on to that faith that has carried us through this far. God is still bigger than this. We are not facing this journey alone.
I wish I could say something helpful, all I can say is it is completely understandable that you feel anxious about the changes. Keep being brave, wishing you and Jessica lots of success with the new medical team. x #thetruthabout
Thank you Claire x
This must be a horrid feeling. I remember when going in to have the gremlin seeing the midwife who did my 36 week check and being so relieved. We take comfort in those we trust. You are right tho the new team will have had brilliant handover and discussion to ensure they give Jessica the best care. So glad you have your faith for reassurance too. All the best luck xx #thetruthabout
Thank you Sarah – it has unsettled me but I keep reminding myself that all the medical team was new to us once and our faith helped us through then and will do so again x
Oh my goodness Louise you are all so brave. We will say a prayer that Jessica’s new team are equally as wonderful as the last. x
Thank you Kyles x
Hi Louise, I wonder if fate brought me here, the post before mine on #twinklytuesday. I read this with a heavy heart, and so much empathy for you guys. It’s all so scary but you have already been so brave: keep going, keep fighting, keep focussed, keep praying, keep being a wonderful Mummy. Sending truck loads of love to Jessica, and all of you x MMT #twinklytuesday.
Thank you so much, trying to stay positive about it all even though the changes are so unsettling x
Hi Louise, I feel anxious just reading your post and I can hear what you are saying about how challenging it is to have a change in consultants and surgeons. Placing our faith in a particular person can give us confidence but like you said it does not mean that someone else isn’t just as capable. I wish there was something I could say to make it better but there isn’t other than reminding you to allow your feelings and to be really kind to yourself through this anxious time. Kirsten
Thank you Kirsten – writing about it has helped a lot; I feel more positive for having expressed my worries x
Gosh, I had never given that side of things any thought. It must be very hard to place so much trust in someone, for them to then not be there anymore. I hope that you have a lovely new consultant that puts your minds at ease quickly. Sending lots of love, you must have to be very brave xxx #TwinklyTuesday
Thank you Kerry x
Hey Louise – I think you’ve got the right attitude. It is obviously hugely scary but it has to be a leap of faith and trust in the medical team and as you say, they will have top training and all the medical history and files too. Hugs X #thetruthabout
Thank you Sam – I keep reminding myself that they will be well informed about her history and that they will all be doing their best for Jessica x
What a moving post. It must be a big worry for you and will feel strange. I’m sure the new consultant and surgeon will be just as good. x
Thank you Sarah x
A very touching read. I found it very moving to see your acceptance of ‘the next surgery’. I was ready to cry when my toddler caught his finger in the lift and ended up with ripped of skin and (what seemed like) lots of blood. The thought of my chid going under a knife and being operated on is unimaginable. Your stoicism tells me how much you have gone through.
I wish you all the best xx
Thank you Joanna – the thought of the next surgery terrifies me but I also know that without it she has no chance of long-term survival. That makes the decision easier although still very scary.
This is something that I’ve wondered about in the past. Martha’s lead consultant looks like he’s not far off retirement age.
But during both admissions (3 weeks and 10 weeks) I didn’t see him once. We haven’t seen him at an outpatients appointment since last September. I know he’s about, I know he see’s Martha’s ECHO reports and I know that every decision regarding Martha’s treatment goes through him.
But I know it’s more than just him. Like you said, Cardiac/Surgical reviews are done with the entire Cardiology team present…everyone has an input. Hell…even my Brother’s consultant was kept in the loop re. Martha’s treatment.
If you’re anything like me, once you found out the name of Jessica’s new consultant you’ll be googling them, checking their credentials – within half an hour you’ll know where they were born, where they studied, where they’ve worked before, whom they trained under and what they specialised in. That’s what we do – we are Heart Parents.
Sending you lots of love.
xxx
Thanks Gemma – it is always good to remember that our consultants are part of a wider team and that the rest of the team is well informed too. Sending lots of love to you too for the next step on Martha’s journey xxx
Wow, what a post. I can’t even imagine how hard it must be to make this next step into the unknown, but you are approaching it in the right way, with courage and faith. All the best for the new relationship with Jessica’s surgeon. Sending healing prayers. #thetruthabout
Thank you Jude x
Hi Louise, you are one remarkable mama! And your children are very blessed to have you. You’re so right… God is bigger than this. He’s got this! I know it’s not easy, and I think you’re incredibly brave. God bless and protect you and your family! x #TwinklyTuesday
Thank you Fatima x
I’m assuming we have the same consultant, and like you I’m devestated Mr A? Is leaving. He has been there from the start and at every stage during a long, and at times, tough journey for us.
Change is always hard but I’m going to focus on one appointment at a time and keep faith in the team.
Wishing you and Jessica all the best x
Thanks Charlotte – I think we probably do have the same consultant and you’re right, change is hard. Focusing on one appointment at a time sounds like a good way forward – wishing you and your family all the best too x
Oh Louise, this must be so hard, but you seem to have the right attitude to it all. Sending hugs x
Thank you Sara, hugs always appreciated! x
I can only imagine how I would feel if/when the craniofacial specialist my 9-year-old has been seeing since birth would move. But you’re right. There’s always something unknown with unique medical conditions. Thanks for linking with #TwinklyTuesday.
It is scary when things change – am slowly getting my head around it now but think I will feel quite emotional again after our next check-up which will be our last with that cardiologist.
You are such a strong lady. This must be so hard for you and you must feel so out of control. Thinking of you xx #thetruthabout
Thanks Vicky – it will definitely hit home a little more when we have that last appointment next month although am trying to stay positive x
This post is such perfect timing! We met our new consultant on Tuesday….Our hero has time off and is retiring at the end of the month 🙁 I could have cried. He was amazing and I felt so at ease with him. This new one I am not to sure of….He is good at what he does but he doesn’t have the same knack of putting people at ease….I am so glad we just have to go for check ups once in a blue moon….
Thinking of you and sending big hugs!
It’s hard saying goodbye to someone you know and trust. Hopefully once you get to know the new consultant, you will feel more comfortable with him too and if not, at least your girls only need occasional check-ups now. So glad they are doing so well and thanks for the hugs! x
You are right, Jessica won’t be unknown to them. We are under a consultant at one hospital but our local hospital cardiologists were perfectly aware of Rainbow… despite having never met them before she was admitted.
The change will be hard but things will be okay!
Beth xx
Thank you Beth – have to confess I am not looking forward to our last appointment with our cardiologist next week but I keep reminding myself that they will know all about Jessica. Glad that your hospital cardiologists were aware of Rainbow before she was admitted too – that must have been reassuring for you.