‘You are so strong, Beth’ – words that I often hear from family, friends & medical staff. To me, these are words that I haven’t really taken time to think about because at the end of the day I am a Mum, be it a Heart Mum, & like all mothers, I only do what is best for my child.
However, perhaps I should accept that I am stronger than I give myself credit for & for this reason, I am recognising my strength today in line with International Women’s Day 2022.
On 6th October 2020, I gave birth to my first child, Zac. Pregnancy & labour didn’t bring me any problems (aside from the pandemic meaning my scans / first 24 hours as a new Mum were spent alone), neither did the first 10 days of Zac’s life. My fiancé, Jonny, & I relished being in the newborn bubble together, adapting well to life as first-time parents.
However, on Friday 16th October at only 10 days-old, Zac wasn’t himself – he wouldn’t feed, was being continually sick & for the life of us, Jonny & I could not stop him screaming. Following a call to 111 in the early hours of Saturday, we were advised to go to A&E at the Royal Berkshire Hospital, Reading. From there, the worst few hours of my life began.
Owing to COVID & the ‘one parent rule’, Jonny & I were separated at the doors to the hospital. Zac was taken in & as an initial check, had his heartrate measured – the reading of which started flashing *250* (bpm). The nurse put this down to a faulty machine, so tried another – again, *250*.. machine number 3 *250*. Suddenly, there was panic – an emergency call was made & within seconds, a team of Doctor’s surrounded us. Zac was taken from me & rushed down to resus – all I could do was follow & run behind. I had no idea what was happening but from how quickly the way things were moving & from the reaction of the medical team, I knew the situation wasn’t good. I also could not stop thinking about Jonny waiting in the carpark, unaware as to what was going on.
In resus, Zac was wired up to machines as Doctor’s desperately tried to bring down Zac’s heart rate & in essence, save his life. I felt helpless as I stood by his side holding an oxygen mask to Zac’s little face. The worry was like no other & how I kept myself calm, I will never know.
After several doses of a drug, Adenosine, being administered to Zac, his heart came down to a normal level. I have since learned that Adenosine is the medication used for irregular heartbeats; however, each dosage that is given temporarily stops the heart & restarts it again. Through my own research & from since being welcomed into several cardiac support groups, the feeling of being given this drug is as if you are drowning – a fact I try to keep to the back of my mind as I dread the reality of Zac going through this.
I was then taken to one side & explained by a Doctor that Zac had gone into SVT (Supraventricular Tachycardia), a condition whereby the heart suddenly beats faster than normal. If left untreated, an episode of SVT can cause cardiac arrest & in some circumstances can sadly, be fatal. Thankfully, & to this day I count my lucky stars, Jonny & I had made it to the hospital before Zac’s condition would have worsened.
Jonny was then allowed into resus to see Zac & I. At that point, the Doctor advised that Zac & I were to be admitted to HDU for the foreseeable. Again, Jonny wouldn’t be allowed onto the ward & we had to say goodbye to one another at the doors of the unit. The 24 hours prior had been horrendous & it was this moment that completely tipped me over the edge – I broke down; being separated as a family in the most horrendous of conditions is something I wouldn’t even wish on my worst enemy.
The days that followed saw Zac go into several episodes of SVT & each time, filled me with absolute dread. At no point did I leave Zac’s side, forever staring at the heart monitor he was connected to as I just came to expect that an episode would be looming, alarms would go off & we’d be instantly back into the same situation as we were in resus – Zac being pumped with Adenosine. On occasions, nurses tried to avoid the Adenosine by using alternative methods to shock his heart – one being completely dunking Zac head-first into a bucket of ice-cold water, but to no avail. Not only did these methods have no impact on Zac, witnessing my tiny baby being held under freezing water was awful. Stopping Zac’s heart & restarting it through Adenosine was the only solution.
After several days, the reason behind Zac’s episodes of SVT became clear – he was diagnosed with Wolff Parkinson White Syndrome. WPW is a condition that causes the heart to beat abnormally fast for periods of time due to being born with an extra electrical circuit to the heart (birth defect). I took some relief from this; having a diagnosis meant I could discuss treatment / next steps with the wonderful team of Cardiology both at the Royal Berkshire & also, Southampton Children’s.
Since being diagnosed with WPW, Zac’s condition has been controlled by medication – he takes 10 syringes a day at the same time every morning & the same time every night. Zac can’t feed for an hour either side of his medication being administered which isn’t always an easy ride, but we manage. Surgery is an option for Zac in later life; however, an ablation is not recommended until Zac is at least 10 years-old owing to the delicacy of the operation – his organs need time to grow.
Jonny & I monitor Zac’s heart 24/7 – we are able to do this from home & although the panic is indescribable when the alarm goes off signalling that there is an issue with Zac’s heart / oxygen levels, being able to manage from home is a blessing.
Life with a baby is never as I had imagined. The worry of being a Heart Mum is real – the slightest bang could shock Zac & send him into SVT. Taking Zac for a walk & hearing a siren, a dog barking, fireworks etc are situations that are unavoidable; however, bring so much worry to us as a family. Moreover, Zac hysterically crying can not only send him into SVT, but is a sign of being in SVT. Having a fever also increases Zac’s heart rate, as do the immunisations that every baby requires. Watching Zac’s heart rise is beyond horrific – it’s always in the back of my mind that should readings reach a certain level then it’s a blue light in an ambulance to hospital, before being pumped with heart-stopping medication.
Jonny, Zac & I are never far away from home. In case of an SVT episode, we must be closeby to a hospital. Fortunately, we live within a mile of the Royal Berkshire which not only is a godsend for Zac, but being so close works wonders for my sanity! A rare night away has been to a hotel in Southampton as again, Zac’s Cardiology Team are less than a mile away at Southampton Children’s Hospital. Holidays abroad are an absolute no-go & while many people feel a trip overseas is something we could do with as a family, I honestly couldn’t think of anything worse! The thought of anything heart-related happening in a foreign country is something I could do without.
Early 2021 I was diagnosed with PTSD & referred for therapy – the flashbacks as to what I’d witnessed in Zac’s early days were beyond terrible. While therapy didn’t help me as such, I have found the greatest relief in connecting with Heart Mum’s across the world! Support from family & friends is something I am most grateful for; however, being able to speak to parents who have been / are going through similar situations is the greatest therapy.
Heart Heroes has been a blessing for me – the support of this incredible charity is next to none & I’d like to thank everyone involved with HH. I’d be lost without you!
With today being International Women’s Day, I’d like to recognise the strength in all Heart Mum’s in the UK & across the world, along with Zac’s wonderful nurses who have taken so much care of him & us as a family. Above all however, I’m recognising the strength I seem to have found in myself over the past 17 months – I’ve developed a strength I never knew I had 12
By Heart Mum Beth Jones
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