Ezra's Story

told by mum


After discovering our first born son had Supraventricular Tachycardia (SVT) at just 10 days old, we never imagined our third child, also a boy, would be delivered 3 weeks early by an emergency caesarean section requiring general aesthetic with the exact same condition.

Not that going through any scenario with a poorly baby is ‘easy’, Jacob, our first born child’s health was a walk in the park in comparison to our third baby, Ezra.

Jacob spent a little time in hospital but after a few days in HDU and collaboration with our local children’s cardiology team, we was discharged on only one form of medication. Jacob suffered from reflux therefore required more frequent doses to make sure his heart stayed within rhythm. After a few years of regular monitoring and testing, he weaned off his medication and is now almost 11 years old living his best life. Pretty straightforward right? Our experience wasn’t that ‘simple’ with Ezra.

Reduced movements, monitoring showing a high fetal heart rate, then a brisk wheelchair ride to theatre all within 14 minutes. Ill never underestimate the feeling of detachment having been put to sleep to deliver your baby, then not be able to see him for over 15 hours knowing he’s been born poorly. I remember waking up from the general anesthetic and immediately messaging my partner, “Has he got SVT?.” I knew. what else could it be?

A week in NICU and we was discharged with two types of medication as one wasn’t enough. We enjoyed Christmas at home as a family of 5 then sadly on New Years Day 2022 after showing off our new slick ECG machine to family, we discovered Ezra was Tachycardic. Straight to hospital we go and that was the start of our dramatic ICU stay.

Failed cannulas and tiny veins meant we had to endure the stress of mid lines and scalp cannulas so we could monitor the effects of the new medication. The consultants originally wanted to find just one medication that would work, but sadly Ezra’s little heart was too strong and it became apparent we needed another medication. Weeks later we finally found a combination of medication that finally kept Ezra’s heart from beating too fast. The relief of not having to watch those monitors and hear those beeps in an anxious state was very welcome.

When Ezra was 16 months we tried to wean him off his medication and sadly he lasted only 3 weeks until we was admitted again. Cue another incredibly stressful experience and we was back on one medication which was working immediately.

Ezra is now 2 years old and doing very well. We’re currently waiting for his most recent trace results which will hopefully allow us to commence weight weaning off his medication again.

We wouldn’t be as positive as we are if it wasn’t for the support we receive from CHF, the resources and opportunities created are invaluable to families.

If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.

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