by Karen Morgan
“The world breaks everyone, and afterward, some are strong at the broken places.”– Ernest Hemmingway
In the UK around 1 in 125 babies are born with congenital heart disease (CHD). I don’t know about you, but that’s a higher number than I expected. Sometimes it’s even phrased as ‘the most common congenital birth defect’, although I’m not sure about this phrasing. Somehow it suggests that because more children have it than at first you might realise, it’s something insignificant – a minor inconvenience.
Well, we all know it’s not. It’s devastating. For all of us.
Even now, the memory of those first awful few months with our son Evan is still raw.
I look back and realise that I was living on auto-pilot. A friend even remembers me telling her, ‘Nothing matters. It’s all about helping him to survive’.
I know from talking to other mums in the same situation that a lot of us felt – and sometimes still feel – that way. So, it’s no surprise that our mental health gets forgotten.
Here are some of the positive factors that I think stopped me and my husband John, from drowning. Although to be honest, at many points along the way, we came close.
Connect with others
It felt really lonely and confusing at first. As soon as we got our diagnosis we were on a different path to other parents and families of healthy children. Though they still had to navigate the chaos of early parenthood, they had the security of a healthy baby. For them the Red Book was a reassuring measure that their child was thriving, nap times could be looked forward to and weaning was a choice they could make for themselves. Not to mention the freedom! If Evan hadn’t fed properly (and he didn’t) or if he had a cold (frequently) we stayed in.
Quite naturally, milestones for other families were the first smile, a first tooth or those first steps. Our milestone was the all-important surgery. We knew that eventually Evan would need his heart repaired and until then our job was to help him put on weight and keep him alive.
Well that was easier said than done. Evan wouldn’t – couldn’t – feed properly and had reflux, so most of our day was getting him to keep milk down. Breast feeding, expressing, early weaning and prescription milk – we tried it all to get him to put on a few measly pounds. We called him the ‘Similac Kid’ in the end as we chugged our way through crates of the stuff in his first year (even though a lot ended up being projectile-vomited onto the wall!)
There was also more than the usual amount of crying and fussiness due to his condition. I remember the sheer frustration and rage I felt as day-after-day, night-after-night, I was tinkering with his mattress trying to find the right angle for him to sleep on or re-washing clothes and bedding, or simply holding his hand as he struggled to breathe. It was wearing and heart-breaking at the same time.
We were very lucky to have supportive families and a few close friends. For everyone who came round to visit us, telephoned or sent cards, we were given new strength. I had many ugly-crying episodes on people and intense bonding experiences.
We were also put in touch with a friend-of-a-friend whose child, now a teenager, had gone through the same thing as Evan. Hearing her story, hearing her say how normal my feelings were and also what questions I should be asking, was a lifeline.
Those connections with others – with the outside world were extremely important and allowed me to see that there was still life outside our little bubble and that one day we would get back to it.
Look after yourself
I made the decision to keep physically fit even when I was crying with tiredness and anxiety. It was the best thing I did. I had run since my early twenties and knew it was the key to keeping my mental health stable in normal times – let alone in the middle of a crisis. Sometimes however, I knew that I would be too emotional to even get out of the house. And so my love-affair with Jillian Michaels’ DVD boxsets began. 30 Day Shred anyone?
I would set up Evan on a little circuit course (lying down of course, he could never move much) and when one of my circuits changed, he would also change to his next ‘activity’ (mainly trying to bat a small dangling toy with his fist).
One thing that I could never deal with was the tiredness. All new parents can relate to this, but I think parents of heart babies have additional stresses that can lead to absolute burn-out. A major factor was that Evan didn’t really have a pattern of sleeping. So he could sleep on and off all day and night with long periods of waking where he struggled to breathe. This meant that I often just sat with him, holding his hand. Additionally, because we were always focussed on helping him put on weight, I was setting alarms to go off every three hours in the middle of the night. It meant I never got more than three-hours sleep in one stretch. We quickly worked it so that in the day and at weekends I napped as much as possible. Sleep is wonderful and necessary. I repeat: sleep is wonderful and necessary.
One of the most overlooked factors of having an ill child is the amount of time taken up with the medical admin of their condition. It was a full time job in itself, going to the Health Visiting clinics, the GP appointments, this hospital for his pre-op and that hospital for his post-pneumonia check-up. There were repeated calls to the dietician and having to wait for calls from the hospital to see if there was a spare bed for his operation.
This all contributed to that overarching sense of isolation. It also made it more important that when I did have free time, I used it for something I wanted to do. I’m not saying it was easy or successful all the time, but when John and I made it out to the cinema or I went to my good friend’s wedding and booked a hotel room for the night, I came back re-energised and much more positive.
Educate yourself and make a plan
As I mentioned above, our goal, the end point, the moment when this nightmare would be over, was his repair op. It was additionally set for the beginning of May when he would have been about six months. And that was all that John and I were focussed on.
I, in particular, struggled with worry over the operation – Was he going to survive? Would something go wrong? – so that having some element of control helped me deal with the unpredictability of the situation.
We made sure that we stuck religiously to the recommendations of the dietician and doctors, writing medicines, techniques and dosages down, as we knew that we’d get home and often have forgotten what was said. When Evan got pneumonia at the end of April and his op was postponed, we followed the recommendation that we didn’t mix with others in case he got another cold or virus. We were in a bubble way before 2020!
When we met our wonderful friend who’d been through similar, she talked us through what might happen during the operation and so we were prepared when we finally met Evan’s surgeon and arrived with a list of questions. Similarly, our amazing liaison nurse, went above and beyond, by being at the end of the phone repeating patiently the answers to all my questions.
As we carried Evan down to the operating theatre on that June day in his tiny surgical gown, John and I knew that we were handing him over having done as much as we could to help him cope during the op.
Accept and seek support
The support offered by the NHS was incredible and in particular our liaison nurse, Sally. She was a quiet figure in our diagnosis consultation, but became pivotal to how we coped over the next year.
It shows how naive I was, that although she was introduced at the beginning of our diagnosis meeting as our liaison nurse, it still didn’t register with me just how serious the situation was.
All I remember about the moment we got the diagnosis was the absolute punch-in-the-gut shock of it all. What the hell was Tetralogy of Fallot? What if I said no, I didn’t want him to have this operation? How on earth could we only be finding this out now? What if…? What…?
We left that room utterly devastated.
Of course Sally followed us, sat us down and got us a cup of tea. She bridged that gap between the consultant whose job was not to become emotional and us two flailing around, reeling from the news we’d just been given.
She let us cry and ask questions, all the while giving us the information we needed at the right time. She arranged to call us the following day and after that became an invaluable support to us. She was there for us every step of the way, intervening when we needed to chase up this appointment or that doctor, helping with the practicalities of preparing for the operation, visiting us on the ward. She was even there two years later as I was having my early pregnancy heart scan with my second son.
There is so much going on when your child is chronically and dangerously ill, that you’re too preoccupied with them and other members of the family to actually know how you’re coping. It’s only when the worst is over that you have a bit of space to process things and sometimes realise that no, everything is not okay.
This is what happened to me. Even before we found out about Evan’s heart condition I had had a terrible pregnancy with Evan where I had bled every day for the first few months due to a massive blood clot. As I had had several miscarriages before, the doctor at the EPU suggested the pregnancy was not viable. To have had the elation of the pregnancy continuing, followed by the blow of his heart condition and all that that entailed on top of everything else was too much. After the birth of my second son (thankfully healthy, with an extra dose of cheekiness) I went into a deep depression. I’ve slowly returned to normal with the help of counselling, anti-depressants and keeping as healthy as possible.
Evan is nearly nine. His operation was a great success and apart from an arrhythmia straight afterwards, he has been running around and healthy ever since. Of course we go to our annual check-ups and have been prepared for the possibility of more operations. On the whole we live with gratitude that Evan has had such a good outcome.
Life seemed very bleak nine years ago. We weathered the storm for a long time. We can only hope that Evan continues to be well and that if not, we will be able to use the courage and resilience we gained first time around.
Don’t lose sight of your mental health. It is important – YOU are important – as much to your heart baby as to yourself. If you do find yourself completely over whelmed reach out to these organisations who may be able to help (find some here).
Read our advice and support for looking after your mental health here.