Living with a heart condition…
It’s not something we ever imagined would grace us and certainly not something that we could imagine living with so flippantly and accommodatingly… but we do.
Some things can’t be changed, you can choose to wrap your children in cotton wool, pander to every tear that’s shed and succumb to giving in and sitting back for the absurd reasons of ‘what ifs’ & ‘you never knows’ or you can dust them off before they’ve even fell, let them see that ‘they can’ and crack on with life.
Our aim is to crack on..
That’s not to say we’re not responsible or we lack in sympathy, it’s just a recognition that you can let life consume you and stop you in your tracks or you can grab it full on and live each day like it could be your last.
Mila, 5, is our reason for living in this way.
Mila came into the world on the 28th of December 2008, nestled between Christmas and the New Year… She was a healthy and beautiful baby born in the middle of the night, by sunrise I’d spent most of her first few hours in the world staring at her and examining every piece of her, her fingers, her toes, kissing her lips on a loop and smoothing the lack of hair she had. She was perfect.
She was a contented baby, covered in love by all her brothers and sisters. She slept well, ate well and wasn’t a sicky baby, she smiled at the right stage, held her head up, rolled over and sat up, all her milestones were met and celebrated…she was a completely normal baby and a joy to have.
At three months I noticed her pulse flickering in her neck like something poking rapidly from beneath her skin, it prompted me to feel her chest which in turn I felt her heart pounding very fast. Unsure if it was normal and not remembering it in our 4 other babies I rang the NHS Direct who assured me that babies hearts beat considerably fast in comparison to adults and reassured me it was nothing to worry about… So I didn’t. I’m not a doctor so my knowledge of heartbeats was zero and I took comfort in their reassurance and put it to the back of my mind.
But I noticed it happening again, twice, so I visited the GP whom after checking her over determined that she was normal and maybe I was just a little fretful as a new mother. He was right, she was fine as each time we got to the doctors her heart was beating normally and I was indeed a little fretful.
Still trying to put it to the back of my mind it happened again at nearly 6 months old, I could see her neck flickering so I decided to take her straight to the GP without making an appointment… and that’s where it all started.
I’m not even sure how we got to the hospital that day, I just remember driving her to the GP to get her checked out and the next moment being in the emergency room at the hospital with hook ups and wires and what seemed like the entire hospital watching over us. It was determined there and then in the blink of an eye that things were not right. Milas heart rate was beating at a dangerously high level of 350bpm instead of the normal 120 and she was teetering on the brink of heart failure… at just 6 months old it was likely that if her heart rate wasn’t reduced she would have a heart attack & all we could do was stand by & watch as everyone battled to correct it.
They tried various manoeuvres on her, threw her into iced water and tried several attempts at stopping her heart with Adenosine and restarting it in the hope of obtaining a normal rhythm, nothing worked. At best her heart would stop beating and restart normally for around 3 seconds before shooting back up to a life threatening level… after all avenues were exhausted and every cardiologist within the hospital was summonsed without joy we were transferred to a high dependency heart unit 30 miles away still aware that at any moment her heart could just decide to stop, give up…
Here they continued to battle to stabilise her heart with different drugs being directly fed into her body via a drip, I thought we were watching her die and ironically as life-threateningly poorly as she was on the inside she remained with a smile on the outside, whilst being poked and prodded, having bloods taken and being examined, with wires and drips she still smiled. Eventually, after around 6 hours of battling and drugs finally absorbing into her body her heart rate returned to an acceptable level but we spent the next week in the high dependency unit as the cardiologist tried different drug concoctions to keep her stable, during this time she remained on monitors and was drip fed drugs as her heart continued to flit in and out of the danger zone.
In those few days she was diagnosed with ‘PJRT Supra Ventricular Tachycardia’….something that the doctors explained is often a common thing for babies to have and be unaware of and mostly grow out of it by the time they are a year old. We were also told that due to the aggressiveness and stubbornness of Mila’s heart rate and its difficulty to control her prognosis would be a permanent condition only correctable with surgery but until that time she would be controlled by beta blockers. To be fair it was a little hard to take in, I thought beta blockers were for old people not a 6 month old baby! But with faith in the doctors we went with the flow.
We understood that the physical structure of her heart was normal, which was good, but the electrical wiring (the pulses) would get confused and fire the wrong way causing her heart to go into overdrive. It was controllable and once big enough she could undergo surgery to try and ‘rewire’ her.
A week later having had training on how to check her heart rate and how to do different manoeuvres to try and restart her heart we were sent home. We had instructions to listen to her heart often during the day and should we establish she was beating too fast we were to monitor her and should it beat too fast for over 20 minutes we were to ring an ambulance. So we cracked on with life and in the next year we ordered ambulances like taxis! We were lucky to go a week without an ambulance or a trip to A&E to help her. It took a while to establish the right medicine mix for her and each time she grew a little her heart would kick off to let us know it needed an increase to keep it stable. We learnt to live with it and take it in our stride. She wasn’t disabled, her mind was still intact and she was physically fit, she just had a dodgy ticker and for that we were thankful and still are.
She lives life completely normally and dances whenever she can…
We still live life and crack on, this little lady is a strong and resilient person, she plays, she learns, and she climbs mountains faster and more enthusiastically than I ever could…
Her heart is still broken but it exudes unbelievable amounts of love every single day… the love that she shows for life even when that life looked like it was slipping away from us has taught us how precious things are and how everything can change in the blink of an eye.
Every night I ask her, “what do you want to do tomorrow Mila?”
We always live for today and know that tomorrow is not promised, but we still look forward to it because Mila does.
She has taught us to embrace a little bit of magic and make believe in the moment.
Living with a heart condition is what you make of it. We don’t have bags of cotton wool here, we get by on ‘you can’s’, beta blockers and love.
Don Purdy says
I can totally understand this, being a parent of a child with a heart condition as well.
She looks gorgeous and happy, what more can you ask for.
http://www.little-leon.blogspot.com is our story.
Good luck and here’s to many more adventures.
Don, Helen & little Leon.
Thankyou. I look forward to reading more of your journey and future adventures x
Hi there iv just read your blog and felt like i had wrote it myself! I have 2 little girls age 4 and 7 both have pjrt and both were diagnosed before they where 6 months old. And we have exactly the same outlook 🙂
It’s the best outlook to have, we ended up in the hospital this morning when I could her rate down for a few hours, pain in the bum, stepped into A&E and she was right as rain… The joys of SVT. She almost back on track 🙂 …thanks for reading my blog x
she is your little miracle! enjoy! xx
Thank you for sharing your story. My son was diagnosed with SVT. He had an ablation in April and is doing well. Until his diagnosis, I was completely unaware of SVT. Once he was diagnosed, as you describe, we became masters at handling episodes and trying to maintain normalcy. We do learn the simply joy of love and time. Your daughter is beautiful. God Bless…
Thank you, I’m glad your son is doing well. I hope it continues forever 🙂 x
Cor blimey, what a thing to have thrown at a baby so young but your attitude is admirable and she is going to grow up with a wonderful outlook to life.
This brought tears to my eyes. I have a little girl with WPW, spent 4 weeks in NICU. We are all very lucky to have our amazing heart kids with us.
We are indeed 🙂