Blake was born in January 2012 after a pretty ordinary pregnancy, although, looking back, the fact we had to repeat the 20-week scan as they couldn’t measure his heart properly, should have rung some alarm bells! When Blake was born, a heart murmur was detected. We were told that there was ‘probably nothing to worry about’ and that it was ‘probably a small hole that will close after 48 hours’. However, 48 hours later, the murmur was still present, but we were told once more that it was ‘probably a small hole, nothing to worry about and come back in 6 weeks to see a consultant. There was no major panic Blake was ‘pink’ eating well and generally a textbook baby.
6 weeks later we met with a local consultant who after examining Blake, said the same thing ‘nothing to worry about, probably a small hole that will close before his first birthday’ but we were referred to the Brompton for a scan to confirm.
When we arrived at Brompton Hospital for Blake’s scan we were so relaxed. We had a seemingly healthy 4-month-old baby, who was sleeping through, we were even due to fly out on our first holiday the following day.
Blake had an ECG, which was fine, and then an ECHO, which is like an ultrasound of the heart. During the Echo, the words ‘Defect’ and ‘operation’ were thrown about. We shared alarmed glances but thought we had misheard. After a 10-minute wait, we were called into the main consultant’s room. Following us were 2 members of his team and our ‘dedicated liaison nurse’ (the fact we had our own nurse confirmed the fact that this was serious).
The news was broken to us that Blake had a major heart defect called tetralogy of fallot (TOF) and he would need corrective open-heart surgery. I looked at James and could literally see the colour drain out of his face and the words bouncing off his head, as he held our perfectly pink textbook baby in his arms. We were ushered off for more tests with Blake and spoke with Liz our CLN (cardiac Liaison Nurse) at length about the next steps and were given an armful of leaflets to read.
I will never forget those phone calls to our parents standing outside the Brompton, whilst the rest of the world carried on around us, all we could do was speak through the fear and tears and repeat the medical jargon that we had just been subjected to.
Needless to say the next few weeks were a blur, holidays were cancelled, house moves pulled out of. I started Googling (don’t we all), looking at pictures of babies post heart surgery in PICU, researching the machines, even going as far as watching the operation on YouTube, whereas James said he would deal with it all when he had to. I went back to work when Blake was small, so leaving him with his amazing grandparents was daunting, just as much for them, having to look out for ‘blue spells’.
This was when we discovered The Brompton Fountain. I started reading other families stories, speaking online to other parents whose children had been ‘repaired’ by Blake’s soon to be surgeon. Then we plucked up the courage to go along to a Battersea Zoo fun day last August, all arranged by The Brompton Fountain. We met other parents who had been though what we were due to face; they happily showed us their little ones scars, once they stopped them running around and having a whale of a time! This was massively important especially for James to visually see older children, some of whom had even more complex conditions than Blake, tearing around without a care in the world. It also gave him the opportunity to speak to other Dads. I can honestly say we came away from that day feeling more positive than we had done in months.
