George’s VSD (hole in the heart) was detected soon after he was born, but his journey to having it corrected was a long and difficult one. His mum, Jessica, shares their story:
I lost a baby at 21 weeks of pregnancy due to problems with my placenta. Because of this, when I became pregnant with George, I was under the care of the Fetal Medicine Team and was scanned by a consultant every two weeks. Despite this, George’s VSD wasn’t picked up on any of these scans. I think this was because the consultant was (understandably) so focused on checking my placenta.
Because of the issues with my placenta, I had a planned induction with George at 36 weeks. This turned into an emergency c-section, as George did not cope well with the induction. In hindsight, this was probably due to his VSD. He was only 4 lbs 9 oz when he was born, but he passed all the immediate checks and was with me for the first day and night in the High Dependency Unit, where I was recovering from the c-section and a subsequent haemorrhage .
George took well to breastfeeding, and for the first couple of days in hospital everything seemed fine. It was only when we were transferred to the post-labour ward that the midwife said he was showing signs of struggling, including grunting.
It was the middle of the night at this point, and my husband had been sent home. The midwife took him to NICU and I didn’t know what was happening for what seemed like a long time. Unfortunately, there was poor signal so I could not get in touch with my husband or family. I remember this as a very scary time.
George was admitted to NICU and stayed there for about a week; he had all sorts of tests and investigations. It was at this point that it was noted George had a VSD. Even then, the medics did not seem to think that it was the VSD which was causing him to struggle. They still thought it was a very small hole, which would fix itself over time. The doctors put his struggling down to him being small, a bit premature and just needing a bit of help.
George got much better and was discharged from NICU after a week. When we were discharged we were given no real sense that the VSD would cause any problems.
Because George was a low birth weight, we had more regular than usual visits from the health visitors to monitor his weight gain . He was breastfeeding well and his weight gain was slow but steady, and the health visitors did not seem overly concerned.
George’s chest did seem to suck in a bit as he breathed and I do remember being asked by more than one health visitor whether George “always breathed like that”. I said yes, because of course he did, and that seemed to allay their concerns. Looking back, I do think that perhaps the health visitors should have picked up that George might be struggling with the VSD more than we thought. I feel a bit like I was being asked to be the “expert” because George was my baby – but how was I supposed to know what was normal and what wasn’t?
Everything was going okay until George was about four-weeks-old. I remember that I breastfed him for quite a long feed, and then my husband took him from me to the changing table to change his nappy. I saw my husband’s face become extremely worried, and he asked me if I thought George looked a bit blue. Before our eyes, we watched as he became bluer and bluer; he became rigid and non responsive and was struggling for breath. We called an ambulance and he was blue-lighted to hospital. The wait for the ambulance was one of the scariest times of my life.
George was admitted to our local hospital and stayed for about two weeks. The first few days were incredibly scary, he was on the PICU and needed CPAP (continuous positive airway pressure) to breathe; he seemed so tiny and was covered in wires and monitors.
George was put on heart medication and had a NG (nasogastric) tube inserted for feeding. We were trained to feed him via the tube and to give him his medication. Although he was on heart medication, there was a sense that the doctors still didn’t think that it was the VSD causing the issues. There was a lot of talk about whether he was choking after feeds, which could be causing the issues. After a couple of weeks, we were told that George was stable enough to come home and we were thrilled.
It was daunting- we needed to feed George via his tube every two hours and give him very regular medication, but we were so happy to be home with him.
The next day, George went blue again and he was blue-lighted back to hospital. I really struggled with that, because I felt like it was such a step backwards. My husband went in the ambulance with George instead of me . I remember really beating myself up over that, and thinking I was a bad mum. In hindsight, I wish I had been a bit kinder to myself. It was such an emotional, stressful time.
The hospital changed George’s medication and he was in hospital for another couple of weeks. By this time, doctors agreed that it was the VSD causing the issues and George would need open heart surgery to fix the hole. More tests showed that the hole was much bigger than originally thought and it was not going to fix itself. However, the doctors wanted him to get to the optimum weight before he had the operation, which would take place at a hospital in a nearby city with specialist congenital heart unit.
Based on his rate of weight gain, it was likely to be around the end of February 2022 before he could have the operation, and the doctors hoped he could be kept stable at home until then. It was late November 2021 when George was discharged home for the second time. We threw ourselves into daily life with him as best we could, though it all centred around his two hourly tube feeds and medication. I felt a constant sense of anxiety and fear.
In early December 2021, George had an outpatient appointment at a clinic run by the specialist congenital heart team who would be doing his operation. The doctor took one look at him and said that George was massively struggling, that ideally he shouldn’t be at home, that he could not wait to reach the optimum weight for the operation and that he would be making an urgent referral for the next available operation slot. That was the one time I remember truly sobbing and sobbing about it all. There had been so much focus on getting him to the optimum weight. To be told we couldn’t wait until then filled me with fear. Surely the risks would be so much higher now?
We did go home for a couple of days, but George started to struggle again and ended up in our local hospital. It was decided he would stay there until a bed became available for the operation. That’s when, what felt like the waiting game, really began. As of this was all happening in late 2021, so COVID restrictions meant the hospital had a one parent policy. My husband and I took it in turns to do 24 hour shifts with George. The signal was really poor there and I found it really emotionally difficult, not being able to see or speak to my husband, friends or family.
Because of his illness, George spent a lot of time in his cot sleeping and I would just sit there watching him and the monitors, with a constant sense of worry. George spent his first Christmas in hospital and then, on 1 January 2022, we were told that George could have his operation the next day. He was transferred to the specialist heart unit in the nearby city and the operation was scheduled to take place on the 5th of January 2022.
The surgeon came to speak with us the day before. Obviously, he had to tell us the risks, but he was also very clear that a VSD is one of the easiest things to fix and that, if all went well, it should solve all of the problems George had been having.
On the day of the operation, I was a nervous wreck. I took lots of photos of George, thinking they might be the last ones. We took George in to be anesthetised. I remember the anaesthetist telling me to give George a big kiss and tell him I would see him soon. I did that, watched George go under, left the room and burst in tears.
The operation took about four hours, which were the longest of my life. When the receptionist from the ICU called to say he was out of surgery, I asked her how it had gone. She told me she wasn’t sure and the surgeons would speak to me when I came up. I was convinced she just didn’t want to tell me the worst possible news, and ran up in absolute terror.
The surgeon came to speak to me with a smile on his face and told me everything had gone well. I will never forget the surgeon; we are so grateful to him and all of the staff who helped George along the way.
George was on ICU for two days and, at first, it was really difficult to see him because he was covered in various drains and tubes. We were so surprised by how quickly he recovered; he was immediately taken off all his medication. We had been told that he might have problems with his sucking reflex after so long being tube fed, but he took to bottle feeding immediately and we were discharged home within a week of arrival.
George was like a different child; he started to put on weight much quicker and he no longer struggled with his breathing at all. He just seemed like an all round happier, healthier baby.
George is now a boisterous, happy nearly two-year-old. He isn’t saying much yet and I worry about that on occasion. But, when I look back at his start in life and the amount of time he spent in and out of hospital, on medication, being tube fed, I have to remind myself that he will do things in his own time. All that matters is that he is healthy.
George’s VSD journey was such a scary, stressful and emotional time, but we got through it and now he is thriving.
When we started the journey, my mum found the Tiny Tickers website and I read some of the stories of children with VSDs. They gave me hope. I hope George’s story can do the same for other parents at the start of their journey.
Find out more about VSD here.
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