Falyn describes life as a heart mum.
Our life as a heart family – the Cranstons
My name is Falyn and my husband Peter and I are parents to two little boys named Fergus and Finley. Fergus is our heart kid.
A couple of years ago when we discovered I was pregnant, we were overjoyed. We had needed a little help to conceive so it made the news even better. You can then imagine our excitement when we found out at the six week scan, we were having not one, but two babies! It was to be the first shock of many, throughout my pregnancy.
At 12 weeks, the sonographer spotted something ‘not quite right’ with the heart of one of our babies, lovingly labelled ‘Twin A’. ‘Twin B’ was given a clean bill of health.
Several weeks later Twin A (now known as Fergus) was diagnosed with hypoplastic left heart syndrome. Basically it meant the left ventricle of the heart had not developed properly. As long as I live, I will never forget a single detail of what happened afterward.
I clearly remember the specialist sitting down across from us, and feeling like I had my emotions in check, until she pulled out a diagram of a heart, started drawing things and said the words ‘this is very serious’. She delivered them in such a way so as not to give us too much hope, while making sure she clearly outlined our options, as she was required to. I have never cried so much in my life.
We learnt briefly about his condition, the options we had (termination, palliative care or surgeries that may or may not work.). We were then handed a brochure about Heart Kids and were ushered out the door.
Shell shocked, we both went back to work because we needed something else to focus on, although neither of us achieved much for the rest of the day.
While I’m thankful we knew about Fergus’ condition before he was born, pregnancy was pretty much ruined for us from that point on. I tried to be hopeful but was never able to stop the ‘what ifs’ from creeping in. I felt, and still feel, as though we were robbed of many of the precious moments you should have as new parents.
It was really hard to attach to these babies in utero and after their birth, until Fergus was safely through his first surgery.
I blamed myself for exploring fertility treatment and thought, if I hadn’t wanted a family so badly, had just been patient and waited my turn, that maybe this wouldn’t have happened to us. Over time, I’ve come to accept that it was just plain old bad luck.
Fergus and Finley were delivered at 37 weeks, and Fergus was taken away immediately. Five days later he had his first open heart surgery.
We spent the first six months of the boy’s lives bouncing in and out of hospital. We were up at Starship for six weeks (two weeks pre, and four weeks post-birth) then transferred to Wellington for a further eight weeks before we went home for the first time.
Less than 24 hours later we were readmitted, where we stayed for another two weeks. Prior to his second heart surgery at six months of age, we spent a total of five weeks at home – sixteen days in a row was our biggest stretch.
Although we were at home off-and-on during that period, we were still isolated – Fergus couldn’t go near large groups of people, we had to limit visitors to the house, and he certainly couldn’t be held by anyone for fear of him getting sick. By the time we were ready and able to accept help, the offers had dried up.
To say those first six months was a strain on us and our relationship is an understatement to such a massive degree. Pete and I were passing ships in the night – we tagged each other in and out of hospital, meanwhile coping with managing the usual household stuff, cleaning, meals, washing, care of his twin, and for Pete, work too.
But eventually we turned a corner. After Fergus recovered from his second open heart surgery at five months old, things finally began to settle down.
Fergus has recently turned two, is doing great and you can’t see a difference between him and his peers – he’s robust, fun and cheeky as all hell. He gives a mean cuddle, terrorizes his brother Finley for fun and lives life like he has no boundaries.
We try not to look too far ahead. Our hopes over the next few months are that he continues to do well, stay healthy and we continue our 12-month-long streak of no hospital admissions!
We have met some incredible people on our heart journey. There have been so many people and health professionals who have shown us real compassion and care, and of course Heart Kids who have been by our side since the beginning.
To know you are not alone, and whatever you’re feeling is normal is one of the most important things to understand.
Having a child with a life-threatening condition changes you. It brings out strength you never knew you had, it makes you appreciate the little things in life. It makes you appreciate every memory you make together because it may be your last. But it also teaches you that miracles do happen.