In | Health Update

12th March 2017

Well, I simply cannot believe it. Today, it has been 6 months since my little girl was sent down to theatre for 8 gruelling hours whilst a team of strangers attempted to save her life. Nothing could have prepared me for what was going to happen within this time following the operation but we have made it, together, and for her to be alive is all I had ever hoped and wished for. I had gone into the operation with a very open mind and sadly, very open eyes to a lot of things that can go wrong with the Fontan procedure taking place but I had also seen many more stories of the positive difference it had made to patients and the quality of life it can provide for them. I would say our journey has been somewhere in the middle of this spectrum - it certainly has not been an easy ride for any of us.

pink lips

It was never a question of Ivy having this operation. It had been declared an essential part of her life from the moment I was 20 weeks pregnant, being the completion of a Single Ventricle System (which you can read about here) which was only ever her only (palliative) option with such a complex heart. The only way she would not have got to this stage would be if she was so seriously not coping that they wouldn't have intervened at all. As many of you had seen, Ivy was strong and so full of life despite her very low oxygen levels,

It is this fabulous way that she manages to hide just what's going on in that little body of hers that has kept my spirits up in these difficult months but this is not to be confused with her being back to her 'normal' self and in general, her health and quality of life has been worse since before the operation in my opinion. 

The operation itself was a huge success. The procedure went smoothly and they have achieved what they set out to do which is improve her circulation. She now has SATS (oxygen) of 90% which is higher than it has ever been before. The also managed to improve a leaking valve (where blood travels backwards through the valve in between heart beats) which means there is less pressure on the heart and this wont need a replacement mechanical one for a few years now. The immediate recovery was on the slow side, but despite knowing how strong and resilient this toddler is, I know she wont do anything until she is completely happy about it and I feel this was the case in terms of her getting out of bed after her operation which she would not do until all of her drains had been removed at 10 days. We know that there was quite a significant infection present which kept us inpatient for such a long while after the operation itself but we never quite got to the source of it and during this part of the 6 week stay, our 2 biggest current concerns were discovered.

A blood clot is present in the section of Ivy's heart that they tied off and doctors didn't seem to agree on what to do with it with some wanting to get rid, others to block it off and others to wait and see what happens. At the moment, it is certainly not causing her any immediate issue but if it was to move, we would have a very serious problem on our hands. They attempted to 'kill' the clot with a blood thinner called Warfarin but this in itself caused us a million and one problems (and was the cause of our ridiculous amount of hospital visits in the lead up to Christmas) and it was decided that the cons outweighed the pros and Ivy needed to come off it and onto an alternative. The clot is still no smaller than when it was discovered in October but it is thankfully no larger either. Intervening at this stage in her recovery seems counter productive so it is being monitored closely.

The more serious and complicated of her issues though is a severe protein loss (called Protein Losing Enteropathy) and despite numerous tests, interventions and referrals to new hospitals (Chelsea and Westminster and GOSH) we are still no closer to finding out what on earth is going on. Many reasons have been ruled out and we are very pleased that a catheter has proved her heart and lung function are not to blame but it is looking increasingly likely that it is her other organs that have decided that they do not want to tolerate her new blood circulation and this is the cause. Her bloodwork seems to come back more confusing with each test that is done which may all be relative to the lengthy amount of time she has now suffered from the protein loss (which can cause even more problems the longer it continues) but with no definitive answers we just have to trust the amazing work the doctors across all of our incredible hospitals are doing for her. Ivy has always been one in a million so it's no surprise this journey has not been straight forward for us or the medical professionals but I have every faith that we will get there eventually.

There are no words that can explain what it feels like when your child's life depends on a constant team of strangers, and in Ivy's case I owe my own happiness to literally hundreds of people, many of which I have only been able to meet once or twice like her surgeon, and some like the breakfast lady or the incredible play specialists become close friends for some of the worst moments of your life. Without the continued hard work and determination of every single person we encounter in hospitals, I may not have my gorgeous girl with me which is a world that's just not worth thinking about. Some of the most important of these people are based at the Royal Brompton, where we have been cared for since pregnancy and last summer the obscene news came that they want to close this incredible hospital - not because it is underachieving in anyway, the complete opposite in fact with the hospital having some of the best results in the country (just look at Ivy), yet politics, geography and Jeremy Hunt have decided that our lives are not stressful enough. I urge any of you who live in or around London to attend the march on the 18th March as part of the fight to keep this amazing, life-saving hospital open. I never imagined this was going to become my life when I was working around the corner in Topshop on Brompton Road at the age of 22 but it has, and it could happen to anyone. I dread to think what this hospital's closure will do to patient's, present and future, and there is honestly no other place I'd rather Ivy be under - judging by how well Ivy has coped with being in and out of hospital, being constantly prodded, poked and living a life that no mother wants for their child but with a constant smile on her face, there's no where else she'd rather be either.

We still have a very long road ahead of us, personally and as part of #teambrompton but I must keep reminding myself that to be on this journey at all has become a privilege and certainly one I would rather be on with my daughter than without. I also want to say, yet again, a massive thank you to you all for your continued support throughout the good and the bad with Ivy. The love and kindness shown by people online has infact been far greater than many 'family' members and I could not have got through it without a lot of that internet presence but mainly of course, thanks to Michael and my mama. Here's to the next 6 months and any small, but progressing improvement and most importantly, for the happiness to continue to outweigh the hospitals.

You can read all posts about Ivy's heart here

You can get read all about saving the Royal Brompton here