It’s Valentine’s day, so everywhere I look there are hearts. Heart frames for photos on Facebook, hearts in hashtags on twitter, heart stickers coming up as options on prisma, hearts all over the high street.
Hearts don’t automatically make me think of love though. For any parent who has experienced what I have, hearts have a very different association- CHD.
Today marks the end of CHD awareness week. 10 years ago I couldn’t have told you what CHD stood for, such was my lack of awareness. Now I could bore you about Congenital Heart Disease for hours. I won’t here though, honest.
I was expecting my third child – a surprise, but a welcome one. My first two children had been textbook pregnancies, easy deliveries, resulting in chubby, healthy, pink little babies. We skipped into our anomaly scan, toddler in tow, excited to find out if we would be blessed with another little boy or another little girl. We were chatting away with the sonographer about what baby’s siblings were hoping for, how different it would be this time itht a big gap between babies, what a beautiful day it was outside. Then she went quiet.
I asked if everything was ok, and she told me she was having problems getting a clear view of baby’s heart and she might need to get someone in to have a look. I could tell she was lying, and turned my face to the screen.
I don’t know if you’ve ever seen an ultrasound scan, but when you look at an unborn baby’s heart in 4 chamber view, it is supposed to look a bit like a circle with a cross in it. My baby’s heart looked like three quarters of a circle, with the final quarter, instead of a smooth curve, bubbly like a blackberry. Every beat and pulse of his little heart looked strained, causing the blackberry quarter to bulge out in strange directions.
“There is something wrong with his heart” I said, putting the sonographer in an awful position. It isn’t her job to break bad news, I know that now, protocol dictates that she calls in a consultant who will then have a look, and explain that you need a referral to a specialist. But she couldn’t lie either. She asked me what made me say that, and I pointed and said “that looks wrong.” She told me she wasn’t quite sure, and went to get the consultant.
All the jovility of the room drained away, leaving a thick, heavy silence that even our toddler didn’t break.
The consultant referred us to the Evalina Children’s Hospital in London for a foetal cardiology scan. A very different experience to a normal anomaly scan, during this type of scan there is no speaking. The consultant had to focus completely on measuring every tiny part of baby’s miniscule heart. Afterwards we were taken to what we now think of as the bad news room.
The bad news room is tiny – just enough space for four chairs, and a low table with a very conspicuous box of tissues on it, and a less conspicuous stack of cardboard bowls, presumably there in case the news makes you vomit.
I didn’t really react as they told me my son had two problems with his heart – Coarctation of the aorta and an AVSD – I was still in shock, I think. I felt weirdly calm and detached.
The consultant sketched out a diagram of a healthy heart and then drew a diagram of my baby’s. The Coarctation meant that my baby’s aorta – which would, after he was born, supply the lower half of his body with oxygenated blood, had a narrowing which would stop it being able to function. The AVSD (Atrioventricular Septal Defect) part meant that he had two holes in his heart, one either side of the valve.
The consultant explained that my son’s collection of defects was fixable on its own, with a fair success rate, but that it was very rare for someone to suffer those defects without also having a severe, life limiting chromosome disorder. If he had the chromosomal issue they suspected, his chances of surviving open heart surgery would plummet to about 2%, with an even slimmer chance he would see his first birthday. They gently let me know that, despite the late stage of my pregnancy, “ending the pregnancy” was an option. I had no idea what that would involve, so they explained that a termination at that stage would involve giving birth.
We opted for an amniocentesis to tell us what exactly we were looking at before we made a decision. By this point I was 22 weeks pregnant. I had a very definite bump, and a very active, kicking baby in there. Every time he kicked my heart broke anew. My baby had a name, he had siblings, he had a family that loved him already – and every time he kicked I was reminded that I might have to plan his funeral.
An amniocentesis is an uncomfortable procedure involving a very long hollow needle being passed through the stomach into the womb, to remove a tiny bit of amniotic fluid for testing. During the test there is another detailed scan, where measurements are taken of baby’s nose, limbs, and the fold of skin at the back of baby’s neck.
I couldn’t take my eyes off the screen. I just kept thinking; “This might be my only chance to see my baby alive.” At one point he reached his tiny fist up towards the cold jelly on my stomach, opened his hand and closed it again. I felt like he was waving to me, telling me “I’m fine mum, just you wait and see.”
The doctor told me that what he had seen had been encouraging, but was no guarantee of a healthy baby and I would have to wait a week for the results. He also told me that he would be prepared to perform a termination “for the good of the child” if my son had the chromosome disorder they suspected – which is described as being incompatible with life.
You know how slowly time goes in the last hour before you finish at work? The next week passed like that – a fog of guilt and trying to be cheery around the other children, crying in desperate, secretive bursts in the bathroom. It doesn’t matter how many medical professional tell you there is no known cause, it’s nothing you did, just one of those things – as a mum the guilt shreds your soul.
A week later I got the phone call that had my legs turn to jelly and collapse beneath me. A kindly nurse that called me to say there was no chromosomal anomaly detected. I made her repeat it four times. Our baby was “just” facing a complex heart defect. He had a 70% chance of surviving both operations. He had a chance.
I was induced two weeks before my due date, in the Evalina Children’s Hospital, where there was a whole team of experts in tiny hearts. I am so unbelievably lucky that we live in a country that has free healthcare. In countries where they don’t, my son’s operations alone can cost over a million, and that’s without costs for delivery and care. I didn’t have to worry about that, I could focus on being there for my boy, learning all I could about his condition, giving him what care I could.
At nine days old my son had his first operation – the Coarctation repair. The cut either side of the obstruction in his aorta and reattached the ends, discarding the piece with the narrowing. Unbelievably, a week later, he was home.
He was tiny, fragile, fed constantly because his body needed so many extra calories just to keep his broken heart beating, but he was alive. For a little while, he almost thrived.
Then he started to lose weight. Not just a little bit; he was so far off the growth chart that they had to add paper at the bottom. He started regularly projectile vomiting. His breathing was laboured, his eyes sunken, his skin an achy grey-blue. He kept on determinedly smiling through as I cut every known allergen out of my diet in case my milk was making him sick and woke him hourly to feed him. We introduced high energy milk into his diet, dripping it into his mouth with a syringe because he didn’t have the energy to suck. I was terrified he was vomiting up too much of his heart meds to survive.
When our appointment at the Evalina finally came, we were given more bad news. Baby was failing to thrive because he was in heart failure. One of his holes had begun to close by itself, but that wasn’t a good thing; the two had been balancing each other out. If he didn’t have his operation soon, he might die.
We weren’t expecting it so soon – had hoped he would be between 3 and 5 before he would need his main repair. His heart was the size of a walnut and would still be beating while they were sewing patches on to cover the holes.
My baby was 7 months old when he went down for surgery, on my birthday.
The longest 6 hours of my life followed. We tried to distract ourseles, but mostly we hung around the hospital grounds, with me clutching his blanket like a mad woman. When we got the call to say he was in recovery, we sprinted to PICU.
When we arrived, they were having troubles rousing him. Panic gripped me again. Could we really have come so far, only for him to fall at this hurdle?
I laid my hand on his tiny head and said “hey little man. Mummy’s here now” and he opened his eyes. A miracle.
We had our dramas in the days that followed. He developed a tolerance to morphine and would not be sedated. He would only relax and lie still in my arms – mummy morphine, the nurse called it. He had an SVT -where his heart sped up dramatically and he had to have yet another new medicine – but we got through it. Within days of his op he was pink and able to breathe. No longer so weak he could barely drink, he was now hoovering up solids like they were going out of fashion.
Two weeks later we took him home for the last time.
Fast forward 9 years and you’d never know, but for the telltale scar, that there was ever anything wrong with my son. He hasn’t been on any meds for years, and now goes for a check up only every two years. For all intents and purposes he has a fully functioning, healthy heart. He is in mainstream school, participates in a wide range of sports, including kick boxing, and is an unstoppable dynamo. His energy and infectious happiness light up rooms.
We got our happy ending.
But on Valentine’s day, when the hearts are everywhere, I am taken back to that dark time, and my own heart breaks for those who didn’t.
If you’d like to donate a couple of quid to help keep me writing, you can do so here.Follow Victoria on social media: