Tuesday 28 August 2018

Five Years On // An Update on Heidi's Heart

We walked familiar roads again today, boarded a train with our two little girls, one who had done
this journey countless times before, and one who, at the request of her sister, was being shown a world of hospital visits that she barely recalls from the intensity of Heidi's illness back in 2013.

It was a different kind of visit this time... we knew the time had probably come for us to move on. Kawasaki Disease will always be part of Heidi's story, always part of our story - her "non-uniform" arteries tell that tale, and there will always be the white noise of worry over how her heart is faring... I approached the appointment with a certain level of anxiety. How can a child who's heart has taken such a beating really ever be "discharged" - how can you go from annual echoes to nothing? I was nervous and went prepared to fight for further monitoring. Some comments made in our appointment last September made me wonder if they were preparing us to move on...

I need not have feared - God is faithful... has always been faithful. In the whole of this journey. In the missed diagnoses and the devastating echo results, in the glimmers of hope and the shadows of grief over a "former life" - a life that was carefree and innocent. He has upheld us and carried us and given us his promises throughout it all. He is at work. Even in the heartache and the agony... even in the questions and the doubts. He is good. He loves us. He loves our baby girl. He is bringing all things together for the good of those who love him.

And so we went through the usual routine - the weighing and measuring, the ECG, the Echo - and then the Doctor's feedback appointment. We were greeted warmly by a Doctor we had not met before. He took interest, spoke with Heidi, knew our case. I knew immediately we could trust him to hear out our concerns.

He shared the good news - The CT scan had revealed there was no clotting on the inner areas of her coronary arteries, and the arteries themselves on the inner part of her heart (which they have never looked at before) looked as though they had been untouched by the disease. Heidi's arteries on the external (which were hugely damaged by the disease 5 years ago) were looking better than ever - her right coronary artery was slightly prominent, but not concerning, and had he not known her history, he probably wouldn't have given it a second glance. The left coronaries looked normal.

Such joy those words brought.

And then the fear started prodding... she was much improved... she was coping without medication... would they discharge her?

I was met with utter reassurance. Our little girl will never be discharged. She will have a yearly ECG and Echo her whole life long. The Team will always be on the end of the phone. So much relief.

And yet it was time for us to be referred from the Consultant led Clinic to a Kawasaki Specialist Team. We are excited at this move... a team which know the specifics of life after Kawasaki Disease as we navigate what life looks like in the shadow of the illness. I had been nervous about the transfer, but in the light of the revelation that they will continue with the annual Echos, we see the referral as nothing but positive.

The Lord has been so good to us, and our sweet girl.

We are eternally thankful to him for the way he has upheld and guided, carried us and led us, provided for us and comforted us... in the darkest parts of the valley, and in the horizon of a hope-filled future where, it seems, we finally find ourselves.

The tears threaten as I write this. Our lives have been changed by this journey... we bare the marks, the emotional scars, the hard memories... and somehow find ourselves in this place where life continues... where suddenly hope seems possible and we can breath a little deeper once again. Somehow I feel I have a deeper and richer appreciation for the small things. Things I wondered if I would ever take delight in again during those dark hospital days.

And so we soldier on... and we continue to pray daily for the hearts of all our children... that whatever life throws at them, whatever battles they are scarred by along the way... their hearts will be steadfast, their feet secure on the rock that is Jesus.

He truly is the light in the darkness.

Thank you from the bottom of our hearts to each one of you who has walked this journey with us.

Please continue to remember our little Heids.


  1. Well, well!! As always beautifully written and tremendously encouraging. Thank you so much for showing us the power of God at work in your weaknesses xx

  2. That's such great news, Claire. Praise God!

  3. we have prayed for you and will continue to do so this was such a beautifuly written piece about your day the lord is good and kind and faithful xx god bless xx

  4. 💕 Wonderful news, praise the Lord!

  5. So glad to hear this news. XX

  6. Fantastic news, a real answer to prayer xx


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