“When we got to Leeds it was very emotional, I just remember most of it being a blur. We would wander around trying to distract ourselves, watching this tiny little boy sleep without a care in the world.”
Heart warrior, Issac’s CHD wasn’t detected until after he was born. Heart mum, Stacey, tells us about her family’s experience of heart surgery at Leeds…
written by mum Stacey
Issac was my first pregnancy, and everything seemed to be going fine throughout its duration.
Issac was born at 40+3 and it was a very quick birth. We stayed in hospital, and it was his baby checks that flagged up a heart murmur, but nothing concerning. He was checked again on day two and the murmur was still there but had quietened down. We got referred for a follow up at seven days old where it would be discussed if he needed to be seen further.
Day 7 came, and the murmur was still present. Someone was definitely looking over us on that day because the neonatologist who we would have been seeing months down the line was free that very second and agreed to see Issac.
This is where we discovered that Issac had a large ventricular septal defect (VSD). That’s when we sat and reflected on how he was from birth until that day, as he was showing signs of struggling; the poor feeds, the poor colour in him. They were all the classic signs of his heart condition, but these were brushed off that I was just an over-cautious, first-time mum.
Issac was referred to Dr Willcoxson from Leeds, but he remained under our neonatologist who monitored him very closely. After a very intense 11 weeks, a decision was made that Issac was going to need surgery. He was given medication and a lot of care throughout this journey.
I read a lot of stories that were full of disappointment for families who were awaiting surgery, but they kept being cancelled.
It was a Tuesday afternoon; I got a call to say Issac’s case had been discussed amongst surgeons and agreed surgery was going to happen that very week. We had to be in Leeds on the Thursday, ready for surgery the Friday.
Those 48 hours were the longest. We got packed and ready. We got halfway to Leeds, and I got a call cancelling the operation. They said the surgeon had been in an emergency and he couldn’t perform Issac’s surgery. Fortunately, we got booked in for the Sunday and his surgery did go ahead on the Monday.
When we got to Leeds it was very emotional, I just remember most of it being a blur. We would wander around trying to distract ourselves, watching this tiny little boy sleep without a care in the world.
We visited PICU briefly and that’s where it hit us hard. All these tiny children hooked up, children in their own rooms…we soon left and went back to our ward.
I had my bloods done for genetic testing. We bathed Issac and made sure he was ready for his big day.
The Monday came and it was just a day of emotions. I think I cried for days. I made his dad sign all the paperwork. All the meetings with the nurses, the surgeon and the anaesthetist were a blur. I didn’t want to listen to any of it. When the psychologist came in, I’m sure I told her to leave me alone.
When Issac went into theatre it was the worst. I walked out of the hospital and went into Leeds. I was checking my phone every five minutes, waiting for the call to say he was out and okay. Three hours felt like days!
We went back to our room as we had to leave the heart ward until Issac was back on the from surgery and on HDU. We got all our stuff and moved it to the accommodation. Once sorted we ate, had a shower and no sooner had we got ready I got the call. Five hours after leaving Issac, he was out of surgery and in intensive care.
No sooner had we hung up the phone, we were running to the unit to see him. Issac was already showing signs of recovery, trying to tug his tube.
He was on a ventilator for about 12 hours in total, which meant he was good to be moved to HDU on the heart ward on the Tuesday evening. The only issues he faced was he had to continue having small amounts of oxygen for most of the week.
His feeds were slowly getting better. He was moved to his own room within four days, and we were discharged just two days after.
Babies are amazing and they go from strength to strength. Isaac was 13 weeks old when he had his surgery, and he is now 9 1/2!
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region. We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
Feedback from heart patients and families tells us your story will help others dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
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