Life with a Pacemaker || 5-years on

Martha's electrical conduction system was damaged during her 2nd open heart surgery. We waited patiently for 10 days to see if her normal rhythm would return, Professor Victor Tsang was confident that it would and that Martha's little body just needed time to recover.

On Monday 25th November, 10 difficult days after her open heart surgery, they informed us during ward rounds that Martha would be going to theatre to have her pacemaker implanted later that day.  It was a procedure that took just under three hours and a device that lasted a little over three years. Martha Grace had surgery to replace the generator on the 24th March 2017.

Martha has virtually no escape rate. Her pacemaker is set to be A-Sensing and V-Pacing; so the pacemaker detects when the Atrium beats, then send the signal for the pacemaker to make her ventricle contract. Her Atrium is paced 24% of the time while her ventricle is paced 100% of the time.

We've been very lucky that the Pacemaker hasn't really given us any cause for concern. In the days leading up to her first pacemaker, I Googled "pacemakers" relentlessly. More specifically, I wanted to know what it was like for a 14-week-old baby to have a Pacemaker. But, there was nothing online that I could find with the answers that I wanted.

All the information I came across was aimed at adults and seemed more focused on the do's and don't in the recovery process. But how do you care for an infant with a Pacemaker? So, I thought it was high time that I wrote a post answering my own questions from 2013.

1) How long will the procedure take?
Martha was in theatre for just under 3 hours when her's was implanted. For her Pacemaker generator replacement surgery in March 2017 (the pacing wires weren't changed), she was back in the recovery room within a couple of hours.

2) Where is it?
I had no idea where Martha's pacemaker would be housed, it had never occurred to me to ask. Martha's pacemaker lives in a little pocket they made above her left kidney. The box would never have been able to fit in her chest at 3 months old. The next time Martha's is changed, it will then be re-positioned just below the clavicle bone.

3) Will the patient feel the pacemaker?
I can't answer for Martha entirely, she's only five and has no memory of her life before a Pacemaker. If you were to physically examine her, you could feel it through her skin. Since she had her pacemaker changed last year, her diaphragm has been twitching due to the amount of energy sent through the pacing wires to make her ventricle contract. Although we can see her diaphragm twitch, and even feel it when holding her, Martha has never complained about it. Hopefully, we have resolved the issue during our most recent appointment at Great Ormond Street Hospital.

4) How long will a battery last?
This varies from patient to patient and is based on how much the pacemaker is used. When Martha's generator was changed after 3 years and 3 months - there was still 6 months left on the battery. Her's has now been in for 20 months and she still has approximately 6 years battery remaining.

5) How do they check the battery and change the settings?
No, they don't just put it in and leave it there. You'll have appointments to interrogate the pacemaker at least every 6 months. Martha's pacemaker is a Medtronic Adapta and it can connect to a machine similar to an ECG machine at Great Ormond Street. We hold the paddle against her side and it picks up a signal and all the information appears on the screen. From here they can check the battery, look for any episodes of VT or any rhythm issues, change the thresholds, make sure it's pacing efficiently and run tests to check the Pacemaker itself. We also have a box at home which we can use if we have any concerns, the information would be sent down the phone line to the EP department at GOSH. They can't interrogate the pacemaker remotely, but they can access the information and confirm any issues.

6) Do's and Don'ts for Martha Grace
We kept Martha Grace off school for 6 weeks after her surgery to replace her generator last year. We were worried that if she was to fall over or if anyone was to knock into her, it would be very painful but might also damage the pacemaker. Her pacemaker has never really posed any restrictions on our day-to-day life. The only time anything was different for Martha was when we were making our way through airport security and she couldn't go through the magnetic body scanner.

Without a Pacemaker, there would be no Martha Grace. As daunting as it is to think of her needing one at only three months old, it has been a lifeline for her and I'm so thankful that the technology was available to us. Martha's electrical conduction system will never return and she will require appointments every 6 months for the rest of her life, as well as surgery every few years to replace the generator and/or pacing wires.


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