Jack’s heart defect, a ventricular septal defect (VSD), was sadly not detected antenatally. It wasn’t until Jack was critically unwell that his heart defect was discovered and treated. This is Jack’s story, told by his mum, Vicki:
We were on cloud nine the day we found out we were expecting our first baby. We went on to have a really straight forward, healthy pregnancy, with no concerns raised at our antenatal scans.
Jack was born in May 2023, 12 days overdue, by an emergency caesarean section due to the cord being wrapped around his neck. His dramatic entrance into this world would unfortunately set us on a similar path for the next seven months.
We bought Jack home the day after he was born and started to settle into our little newborn bubble. Sadly, this was short-lived. At three days old, we took Jack to A&E as he was struggling to feed, seemed very lethargic, and was vomiting quite a lot. Upon arrival, we were seen by a doctor who checked Jack over. After just a few minutes, the doctor swiftly walked us to the paediatric ward.
The next few hours still feel like an emotional blur now. Jack was treated for suspected meningitis straight away. However, nothing could have prepared us for what Jack went through during his first week of life to try and get to the bottom of what was causing his symptoms.
Jack had a lumbar puncture, copious blood tests, phototherapy for jaundice, a nasogastric (NG) tube fitted, a cannula, and a chest x-ray. He was then blue lighted from our local hospital to a larger one so he could have a scan on a suspected twisted bowel. Finally, Jack had an echocardiogram.
After the scan of Jack’s heart, we were told he had a small hole. Knowing everything we know now, it’s hard to believe the lack of information they gave us that day. They didn’t even refer to it as a ventricular septal defect (VSD) – just a hole. We were told it would likely close on its own and he would have another scan at eight weeks old.
Despite all the tests, the doctors still couldn’t give us a formal diagnosis to explain why Jack was so unwell.
After a week in the hospital, Jack was doing a lot better and tolerating small feeds, so we were discharged. We were so relieved to be going home and to start family life, but something didn’t feel right. I wasn’t happy with the way Jack was feeding and how dismissive the hospital had been about it.
The next ten weeks were so far from the newborn life I had imagined. Jack was taking his feeds, but only in small amounts, and constantly falling asleep on the bottle. This meant Jack was not gaining weight as expected, so our health visitor began visiting weekly. Despite this, we still hadn’t received Jack’s referral appointment for his heart check.
During this time, our health visitor advised us four times to take Jack to our local GP to be checked over and to chase our referral for his heart scan. Each time we did it, I felt like they were not listening to our concerns, dismissing Jack’s poor weight gain, and telling us there were long delays for hospital referral appointments.
Our first visit to the GP resulted in us being told that some babies gain weight slowly. The second put it down to a lactose intolerance and prescribed a lactose-free formula. The third visit was the worst. We were told they could not hear the murmur in Jack’s heart and, therefore, the hole must have closed. On the fourth and final visit, we had had enough. Jack was now completely off the centile chart and we demanded something be done to help Jack, as we just couldn’t go on the way things were.
Looking back now, it’s so upsetting and frustrating that none of the healthcare professionals we came into contact with could connect the dots between the hole in the heart that we were telling them about and Jack’s failure to thrive. I still struggle today with the fact I didn’t push harder for Jack’s heart to get checked. It’s a constant battle I have with myself – I should have done more, but how was I to know? I trusted what the health professionals were telling us. “I’m a mum, not a doctor” is what I constantly have to remind myself.
On the day of our fourth visit to the GP, we finally saw a doctor who listened and agreed with our concerns. She instantly called our local hospital and explained the situation. That evening Jack was admitted to the paediatric ward and our VSD journey began.
On the 25th of July 2023, Jack finally had a heart scan. I sat next to the bed and held Jack’s hand as the consultant sat on the opposite side in complete silence for what felt like a lifetime. After 30 minutes, he left the room and told us he would be back in a few minutes.
The consultant returned with two nurses and asked us to take a seat. I remember going completely numb as I looked at my partner, both terrified about what he was going to tell us. He then explained: “Jack has quite a large hole in the heart, known as a ventricular septal defect, and this is what has been causing his feeding and weight issues. Jack will need open heart surgery to repair it.” The consultant had said it so calmly, and I remember feeling relieved initially. We finally had an answer. The relief quickly turned to fear, sadness, confusion, and anger – a complete emotional rollercoaster.
The consultant sat with us for a little while and explained what everything meant. He even drew us a diagram of what the VSD looked like to help us better understand, but everything he said went in one ear and out the other. Not because he explained things in a bad way, but because I just couldn’t believe what I was hearing. I just wanted him to finish what he was saying so he could leave and I could let all the emotions out.
That day was so difficult and one I will never forget, but the doctors and nurses were just amazing and really supported us. Once we had taken it all in, our minds then went into overdrive with all the questions we wished we had asked when the consultant was with us. We just couldn’t process all the information and questions at the time.
The consultant was great. Without us asking, he popped back just a few hours later to see how we were and asked if we had any questions for him. After asking all our questions, we felt a lot calmer being forearmed with all the information.
We spent the following few days at our local hospital, waiting to be referred to a heart centre, where Jack could be seen by cardiac specialists and get a proper plan in place for his VSD repair. The day we were transferred was another really difficult day. This was the day where it all really hit home just how serious everything was.
Jack was seen by a lot of people that day. All of them agreed Jack needed to be admitted to the cardiac ward to get stronger for his surgery. Although it was so emotional being told he was too weak to be at home; being admitted to the cardiac ward was the best thing for us all.
We were initially told Jack would be in hospital for a prolonged time to get him stronger for surgery, but just like he has done on so many occasions on this journey, he proved them all wrong. Jack was in the cardiac ward for just one week.
During that time he had an NG tube fitted, and myself and my partner were trained on tube feeding so that we could take him home to get him bigger and stronger. Jack had all his feeds via the tube as his body couldn’t cope with the strain on his heart from taking a bottle. Although the tube feeding was quite overwhelming at first, it was the best thing for Jack. He was finally gaining weight at a good pace.
Our home quickly resembled a hospital stock room with all the feeding equipment we had delivered for Jack. We felt more like nurses than parents at first. It was all so daunting being at home on our own with Jack, as we were fully responsible for administering all his feeds and medication via his tube.
I remember that first week being so tough emotionally. I was sad that this was now our reality, scared about everything to come, and lost in a world we knew nothing about. These feelings soon passed. We found our feet and settled into our new routine, with our sole focus being on getting Jack to the correct weight for surgery.
Several weeks passed, and during this time we had numerous routine check-ups with Jack’s cardiologist. The appointments were always long, as Jack had to have several things checked each time: an electrocardiogram (ECG), echocardiogram, and general observations.
It was the middle of September when we attended a routine check-up, and Jack had reached his target weight for surgery. His cardiologist was happy to add him to the surgery list. We left that appointment happy, which I remember feeling guilty about. How could we feel happy that our son was ready for open heart surgery? We quickly learned that you have to take the small wins on this journey.
After weeks of tube feeding and dealing with all the difficulties that came with it – like tubes being pulled out, constant vomiting, tears every time the tube tape needed to be changed – the fact we got Jack to his goal weight, and he was ready for the next stage was a little win for us.
Everything started to move quite quickly after that appointment. The following week, we had the call to say Jack’s case was discussed with the heart centre, and they were happy to accept him. Jack was going to be added to the surgeon’s list. They informed us there was a long waiting list, and we would likely be waiting a few months for a surgery date – this quickly brought us back to the reality of this journey: with every high comes a low.
To our surprise, the following week we received a call asking us to attend a pre-operative assessment at the heart centre, in preparation for Jack’s surgery. They had a surgery date for him – the 31st of October. I was not expecting my reaction when I was told the date for Jack’s surgery. It broke me. We had been in fight or flight mode since Jack’s diagnosis and being given a date made it all so real. For the first time, I allowed myself to feel scared for what was to come.
We attended the pre-operative assessment and everything went well. We left feeling more confident about going to the heart centre for the surgery, as opposed to our local hospital. Then came the next low – Jack’s surgery was cancelled due to a lack of beds. Looking back now, the only thing that got us through the low points, was Jack. Even going through everything he was, he was still such a happy boy who made us laugh and smile every day. He made an incredibly difficult time so much easier to manage.
Two weeks passed, and we received the call we had been waiting for. We had a new date for surgery – the 20th of November. It felt different this time, almost like we’d believe it when we saw it, so we just carried on as normal and tried to not think about it.
The day before the planned surgery came around, and it was time to call the hospital to see if Jack had a bed. Would it be second time lucky for us? It was, and we were so grateful that it was going to go ahead this time. We had heard so many stories of families having numerous cancellations. This was another small little win in Jack’s heart journey.
The night before Jack’s surgery was one of the hardest for me. Only one of us could stay with Jack that night, so it was just me and Jack in a very small cubicle with a lot of hustle and bustle going on. Jack went to sleep with no problem. I just sat there all night, trying to distract myself with Netflix, but I couldn’t stop my mind from going over everything. However hard I tried, the intrusive thoughts just wouldn’t stop.
I still find it very difficult to talk about the day of Jack’s surgery. It’s going to take some time to process it all. What I can say is: that it was a very tense, long, and emotional day. Jack was in the absolute best hands. The surgical team, paediatric intensive care unit (PICU) team, and all the nurses, dietitians, and speech and language therapists, were all incredible.
Jack’s surgery went very well. After six hours in theatre, he spent 24 hours in intensive care, before going back to the general ward. Jack recovered amazingly well. We just couldn’t believe how he bounced back to his usual self so quickly after such a big operation.
After nine nights in hospital, we were discharged. Going home never felt so good. Jack is now eight weeks post-op and all the symptoms pre-op have now gone. We have his next check-up in the next few weeks, where we hope for nothing but positive news.
We couldn’t be prouder of Jack and how he has handled everything he has had to face in his short little life. He truly is a warrior.