Blake’s Story
Written by Mum Lucy

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.

In September we took the opportunity to meet with Blake’s surgeon, who spent 45 minutes talking us through everything (I would encourage every parent in our situation to do this, I cannot begin to tell you how much this helped us prepare) and answering our questions.

On 22nd November 2012 the 3 of us walked through the doors of the Royal Brompton Hospital with unspoken thoughts that there was a 2% chance we could be walking out without Blake in 2 weeks time. To be honest with you the 8 days which followed the 22nd November are a bit of a blur. All I know is Blake’s op time was moved so we had 12 hours without a bottle or water, the playroom and sensory area literally saved our bacon and the sanity of Rose Ward! We experienced every emotion under the sun. After surgery Blake was in PICU for 5 days, PICU is a strange place, it’s like you have stepped out of the real world for a while, you sit in a big chair pretty much in silence staring at the most precious thing in your life, relying on people that are doing their job (which in itself is astonishing), to keep our little boy alive. Your friends and family are getting up and going to work as normal but your life is anything but. What I do remember is Trudy, our saving grace, who would pop in say ‘Hi’, to see how we are doing, ask if we needed anything, and most importantly top up the coffee and tea in the parent kitchen. Coffee. You take this for granted and don’t realise how much of a relief being able to make coffee is. You get talking to other parents ‘would you like a drink’ the most simple gesture there is, but in PICU can be the most meaningful.

Don’t get me wrong the Brompton Fountain do a lot more than days out and coffee! They supply toys, soft chairs in PICU for parents (which there can never be enough of!), overnight packs for unexpected stays . . . .the list goes on. But this is all from donations and the sheer determination of the Team at the Brompton Fountain.

Blake’s heart journey is by no means over but he is getting bigger and cheekier by the day, every milestone is super special to us, because there was a small chance we may have never seen them. We will as a family do our upmost to support the Brompton Fountain, who makes a tough time in life that little bit less scary.

Michelle and James

More families we have helped

Edward's Story
Edward David Nash was born with AVSD (Atrioventricular septal defect). This condition had been picked up prenatally, so we knew what was to come. Edward often had cold hands and feet and a very pale complexion due to poorly oxygenated blood. He would also struggle to feed, becoming breathless and tired. At four and a half months old, Edward was admitted to the Royal Brompton Hospital Children’s Cardiac Unit for his planned heart surgery.
Daisy’s Story
Daisy was born in September, weighing a very healthy 8lbs 4. Everything was fine for the first three months, then on New Year’s Eve, she was diagnosed with hip dysplasia and fitted with a hip harness for four months. This seemed to solve the problem, but soon after, we noticed she had very poor muscle tone and wasn’t doing the things a typical 4-5 month old should be doing, like holding her head up, and she was very floppy.
Isabel’s Story
I was 30 weeks pregnant when I discovered our baby was going to need heart surgery following her diagnosis of Coarctation of the Aorta, as well as a VSD (Ventricular Septal Defect) and three ASDs (Atrial Septal Defects). Our world fell apart; we had never even heard of these conditions before, and I felt terrified.

What are you searching for?

Popular Searches