Claire’s son, Charlie, was diagnosed with Transposition of the Great Arteries (TGA) at his 20-week scan. Here Claire shares their emotional story, from pregnancy and birth to surgery and recovery during the pandemic:
In July 2019, my husband Ade and I were over the moon to find out we were expecting our second baby. My pregnancy was progressing well and we felt reassured after the 12 week scan.
On 6th November 2019, we went for our 20 week scan. All seemed to be fine, but when the sonographer checked the baby’s heart, she said she couldn’t see what she needed to see due to his position. When the baby moved and she checked again, and although I didn’t know what she was looking for, I could see that she had a clear, unobstructed view of the heart.
It seemed that she looked for an eternity, I felt uneasy and was willing her to break the silence by saying “yes, all is fine”. Those words never came.
Instead, she said she felt she had been looking at his heart for too long and needed a colleague to have a look. Very quickly, when the second sonographer came in, she mentioned to her colleague that the arteries were, “the wrong way round” and broke the news to us that our baby had a heart defect.
I remember Ade asking her if it was serious, and she told us that it was, and that he would have to have open heart surgery. We both broke down. We were taken to see a midwife from the Fetal Medicine Unit, who said they suspected our baby had Transposition of the Great Arteries (TGA), but that we would be referred to our local specialist hospital, Liverpool Women’s, for confirmation of the diagnosis.
The five days that followed were a blur, and time seemed to stand still until our specialist appointment. We spent endless hours reading and re-reading every single TGA story on the Tiny Tickers website, clinging on to the positives in the stories of all the gorgeous heart warriors, and learning all we could about the condition and other people’s experiences.
On 11th November 2019, we met the specialist team at Liverpool Women’s hospital. My Mum came with us for some moral support, as we both felt we may be too overwhelmed to take all the information in. After a scan, the cardiologist confirmed the suspected diagnosis – Transposition of the Great Arteries.
We were told it was “Simple TGA.” This term did not minimise the seriousness of the condition – it just meant there were no additional defects that commonly occur with TGA. Despite us always saying we wanted the gender to be a surprise, we had agreed that we wanted to know to help us prepare ourselves, and so at the specialist scan they kindly told us that we were expecting a little boy – a baby brother for our daughter, Ava.
We found that the medial team were very direct about the risks, which of course we appreciated they need to be, but it was so scary and overwhelming. We were told that the first two hours of our baby’s life would be critical, and that he would need intravenous medication (Prostaglandin) within minutes of birth. He would also be ventilated straight away.
It was likely our boy would also need a balloon septostomy shortly after his birth, before needing to have open heart surgery within the first two weeks of life.
We listened carefully to the statistics around the success of the surgery, and the things that could go wrong for our boy, who would be born with a condition that was, “not compatible with life”. We began to call him our “little warrior”, and the reality set in that he would have an almighty fight on his hands.
Two weeks after our diagnosis, we went to Centreparcs for a weekend at the Christmas winter wonderland with our friends, a tradition we started the year before for our daughter’s first Christmas.
On the last night, we stood watching an amazing fireworks display over the lake and we had a moment. Looking up at the sky, Ade and I promised Ava that next year, we would be back to show her baby brother the fireworks. Although I was still terrified about what was to come, I truly believed in our little warrior and had a sense of calm and belief he would be ok.
The next few months passed and although it was difficult, we focused on making things as normal as possible for Ava, who was only one at the time. I had had an emergency C-section with Ava and, after a really hard time deciding, we agreed that I would have a planned C-section this time. This was a particularly hard decision to make, as it meant that I would have to be away from the baby for at least the first night.
The plan was that he would be born at Liverpool Women’s hospital, and blue lighted by specialist ambulance as soon as he was stable to nearby Alder Hey Children’s hospital. Although this journey was only five miles, we were told repeatedly at our appointments that our baby “might not make the transfer”.
He had to get to Alder Hey urgently in case the balloon septostomy needed to be performed. We were told this would be the only option if the prostaglandin didn’t work sufficiently. The five mile journey was something that occupied a lot of my worries, and although the risk of him not making it to Alder Hey was very low, I just couldn’t get it out of my mind. My desire to be there and try to protect my baby was overwhelming, but I had to keep reminding myself that the medical team would do everything they could for him, and that he needed their expert care.
My C-section was booked for 17th March 2020, and in the weeks leading up to the date, the news was full of the coronavirus pandemic. Although we were concerned, we could only focus on our baby. I didn’t read anything to do with the virus, as I just didn’t feel I could cope with having an additional worry. There was nothing we could do about it, so we just had to accept that we would deal with the impact as and when it happened.
On the 17th March we arrived at Liverpool Women’s and, although I felt relatively calm whilst we were waiting, I really felt panicked when we went into theatre. Months of fear about what was going to happen, particularly in those first seconds and minutes all came to a head. Would he cry? Would he be blue? Would they be able to help him? We had been warned that there would be multiple doctors in the delivery theatre – all with their own specific role. It was so overwhelming to see over 25 medical professionals, all there to administer lifesaving treatment to our baby who was still safely inside me.
At 10.50am, our beautiful little warrior, Charlie Joseph, made his way into the world. We were warned he might not cry, but he did and it was the best sound I’ve ever heard. They held him up for us to see – he was a beautiful pink colour and absolutely gorgeous! He looked huge – 8lb 12oz!
Charlie was immediately taken to the other side of the room to be intubated and given Prostaglandin intravenously. I wasn’t allowed to touch or hold him, but a lovely midwife took my phone over to where they were working on him to take some photos. After a few minutes, Charlie was wheeled past us and taken away to NICU for further stabilisation. I begged the team to look after him and make sure he survived. The kindest doctor reassured me, and congratulated us on the birth of our son, smiling and telling us we had “a gorgeous little boy”. A small gesture, but I remember feeling so grateful that somebody had smiled at me and said something so normal at the most terrifying time.
Charlie was stabilised before quickly being transferred to Alder Hey. I didn’t know until days later, but as he was being wheeled out to the waiting ambulance, the team had to stop to work on him in the corridor and clear his lungs as his oxygen saturations really dropped. Ade was told they needed to get him to Alder Hey urgently as the Prostaglandin wasn’t working well enough, and Charlie required the balloon septostomy.
Ade wasn’t allowed to go in the specialist ambulance as Charlie was blue-lighted, but he and my dad followed by car, whilst my mum came to be with me. Ade said he and my dad didn’t say a word to each other on the journey and were just hoping and praying for good news when they arrived.
Thankfully, Charlie arrived safely at Alder Hey and was admitted to NICU. Ade gave consent for the balloon septostomy to be carried out. It was awful not being there, but Dad FaceTimed us so Mum and I could virtually meet the medical team and hear what their plan was.
At three hours old, Charlie had the balloon septostomy which was successful and he was transferred back to NICU where his stats improved. Due to coronavirus restrictions, it was supposed to be parents only allowed on NICU, however, my dad was allowed in briefly to meet Charlie, which was a real comfort. They FaceTimed me to show me that he was back on NICU and stable. They also sent lots of photos, and a beautiful video of Charlie with the Beatles song, “Blackbird” playing in the background. I must have watched that short video a hundred times that night, and Blackbird will always be Charlie’s special song.
The night was awful as I desperately wanted to be with my boy – I just had to keep reminding myself that he was in the best place and his daddy was with him. The lovely team at Liverpool Women’s completed my discharge paperwork in the middle of the night so that I could leave first thing.
After an agonising 21 hours apart, I got to Alder Hey and was reunited with my boy just before 8am – it was so overwhelming. Later that night, when he was exactly 36 hours old, I got to hold my beautiful Charlie for the first time. The relief was just incredible and I promised him we would look after him and he would be ok.
Charlie spent three nights on NICU, which was longer than we expected due to some issues with his breathing and apnoeas, before moving to ward 1C. It was then a waiting game until his open heart surgery, which was scheduled for 25th March when Charlie would be eight days old.
Two days before his surgery, on 23rd March, the UK lockdown was announced. Although we had only been able to see Ava once in the five days since Charlie had been born, the lockdown news meant that my Mum and Dad wouldn’t be able to bring her to see us at all. I had only ever been away from Ava for one night in her life, and it was just heart-breaking not to be able to see her. That night was really tough for me – I just couldn’t believe that the pandemic was happening, and that it was making such a hard situation even harder. I was inconsolable and just felt so helpless.
The morning of Charlie’s surgery was so awful. When they came down to take him to theatre, I felt physically sick. We had a beautiful baby who we had spent eight precious days with, and we had to hand him over to the surgical team. All we could do was hope and pray for the best outcome.
It was the hardest thing we have ever had to do – holding Charlie’s tiny little hand and kissing him as they put him to sleep, then walking away from him, leaving him to face the biggest fight of his life without us.
We knew Charlie had to go through the surgery to be able to survive, but it was just heart-breaking. We went back to our hospital accommodation – we couldn’t go anywhere else due to lockdown. It was so so surreal – we coped on auto pilot but the hours seemed endless. I just sat on the windowsill in our room staring out and willing the hours to pass.
Six hours later, at 14.32, two hours before we were expecting a call, Charlie’s amazing surgeon (and our all-time hero) rang me to say that Charlie was fine and his surgery has been successful. We couldn’t contain ourselves and have just never felt emotion like it. We literally fell to our knees and sobbed.
We were told we could go to see Charlie on NICU 45 minutes later. A lot of the stories I had read said that nothing can prepare you for the sight of your baby post open heart surgery, but I didn’t get that panic seeing him. He looked so so vulnerable and poorly, but I had prepared myself and was just so elated that he had made it through. I held his little hand and told him how proud we were of him.
We had been so focused on Charlie getting through the surgery that we really hadn’t prepared ourselves for the possibility of how poorly he would be afterwards. Within half an hour or so of being back on NICU, we became aware that the team were concerned about his stats, and particularly his extremely erratic heart rhythm. Looking back, it was a gradual thing, and although they all remained very calm, it became increasingly apparent that Charlie was becoming very unstable.
Minute by minute, more and more medics were around Charlie’s bed. We were very panicked and upset and the incredible nurse who was looking after him asked us if we wanted to go outside. I asked her if she wanted us to leave because she thought he was going to die. We didn’t leave – there was no way we could.
I remember moving to the side of his bed to make way for all the doctors – it’s impossible to describe the feeling of helplessness, and it’s still so upsetting thinking back to the fear we felt at that time. I remembered that the anaesthetist who saw us before Charlie’s surgery told us that we would know how well he was post surgery by the amount of people around his bed.
As I looked at my tiny baby and all the medics around him, that’s all I could think about. Charlie’s surgeon came to see us. He brought a sense of real calm whenever we saw him. After different medications and cooling Charlie’s body temperature had little positive impact on his erratic heart rhythm, it was agreed that the surgeon and his team would attempt to reduce some of the swelling around his heart by removing some swabs that had been left in his chest.
Charlie’s chest had been left open so they were able to do the procedure that night. Removing the swabs didn’t improve Charlie’s rhythm, so the team placed pacemaker wires on his heart as a temporary solution to try and regulate his rhythm.
We waited outside and again prayed and prayed he would be ok. The pacer wires did the job of regulating Charlie’s heart rhythm, and although Charlie remained critically ill, he became more stable. Once we were allowed back on to NICU, we didn’t leave Charlie’s side, we just sat with him and held his hand, watching the monitors and praying the numbers improved.
The next few days were an absolute rollercoaster of emotions. For every slight up, there seemed to be a down. We became experts at reading the machines and were completely fixated by the numbers – obsessing over slight changes and worrying constantly.
Charlie was blessed by the hospital priest the morning after his surgery and that gave us some comfort. Ade has never been religious but he went to the hospital chapel every day. Our little boy was so, so swollen – he was absolutely full of fluid because he was on so many medications. His body temperature had been cooled so he was very cold to touch. I absolutely hated that – every single instinct in me just wanted to get him and to hold him close to me and to warm him up.
Charlie was also “chemically paralysed” so he couldn’t move at all. I hated that phrase and I just felt so sorry that our precious little boy was having to go through so much. Two days after Charlie’s surgery we were told that due to coronavirus, only one parent was allowed at a time on NICU. That was so hard – Charlie was still extremely unwell and it was heart-breaking that we had to take it in turns to be with him.
The nurses were incredible – but not being able to support each other was awful, and when it wasn’t my turn to sit with Charlie, I felt completely lost. It was so unnatural. The day after that was Ava’s second birthday. We had decided that we were going to celebrate together when Charlie got home as she didn’t know any different, but it was a really really sad day for us. The nurses made a birthday card for Ava from Charlie, using his handprints to make a flamingo!! I cried my eyes out when they gave it to us as it was such a kind and thoughtful gesture.
Over the next week, Charlie remained on NICU but continued to improve. His chest had been left open as he was so swollen. Six days post surgery the team closed his chest which was another huge hurdle. Charlie was slowly weened off the medication that was being used to keep him chemically paralysed and we would watch him closely for any flickers of movement – it was overwhelming to see him begin to make very slight movements of his body, and very briefly open his beautiful eyes.
The day after his chest was closed, Charlie was extubated and we were amazed when our little warrior began to breathe on his own with some help from the oxiflo machine. Charlie being extubated meant that after a long week, we were able to hold our boy again.
Nine days after his surgery, Charlie was transferred back from NICU to 1C – another huge step. The following day, Charlie appeared stable and was having quite minimal support with his breathing, however I had a strong feeling that something wasn’t right, despite his stats being ok. I noticed that he wasn’t as responsive, and his breathing looked unusual.
After some checks from doctors, things escalated quickly. It was suggested that Charlie had some sort of infection, possibly sepsis. As Charlie was having some respiratory problems, they told us that he needed to be isolated for 48 hours and tested for coronavirus. It was horrendous – I was allowed to be isolated with him, but Ade had to kiss him goodbye, not knowing what the outcome would be.
Charlie being wheeled down to the isolation unit on HDU was the most surreal experience of my life. It was the middle of the night and all of the medical staff and porters were in PPE – as we walked behind him down the white corridors it was like something out of a sci-fi film. The nurses in isolation were absolutely incredible, but it was such a hard time. After an endless 48 hours, the result came back negative and we were elated. Charlie was diagnosed with a common flu virus, but he recovered quickly and we were transferred back to 1C for a few more days, which were thankfully uneventful!
After 24 days in Alder Hey, 12 of which were spent in NICU, Charlie was discharged on 10th April 2020…Good Friday! It was the best Friday ever! We got to take him home and finally introduce him to his big sister, Ava which was so special.
Lockdown meant we had lots of time together at home. Although it was sad that we couldn’t introduce Charlie to our closest family, we were just so so grateful and happy to have him home. Our experience gave us so much perspective and we were just so thankful to be together with both of our babies.
It seemed as if the whole country was fed up with being stuck at home, where as our desperation to actually get home was indescribable. It was all we wanted, so we have enjoyed every day since! Once we were home, Charlie took to breast feeding like an absolute pro, which I was delighted about. He had been tube-fed breast milk in hospital and took expressed milk in a bottle when he was well enough, but once he was home our little guzzler began to pile on the weight, putting on over a pound in his first week post discharge!
Looking back on Charlie’s time in Alder Hey is hard and emotional, but my overwhelming feeling is pride. He went through so much in the first 24 days of his life. There were so many heart-breaking, terrifying times, but Charlie fought from the second he was born, so it was important that we tried to stay strong and fight for him too.
Although the days felt endless at the time, looking back now it’s just incredible to think of what he went through, and how quickly he recovered – it was like a miracle unfolding before our eyes. To anybody who is going through those scary weeks and months post diagnosis, keep believing that everything will be ok. Nothing anyone can say will take away the fear of what is to come, but the outcomes for TGA babies are so positive. The experience will change you forever, but statistically, the likelihood is that once those first few challenging weeks are over, you will have a lifetime of happiness with your precious little warrior.
I have no doubt that had Charlie’s TGA not been picked up antenatally, things would have been very different for him. We will be forever grateful that the sonographer at our local hospital (The Countess of Chester), was able to identify the problem, and that Charlie was given the best chance and the life-saving care he needed in those crucial minutes and hours after birth.
Charlie is seven months old now and is just an absolute joy. He is the happiest, most beautiful baby – he smiles and chuckles all day and is just a ray of sunshine. His big sister keeps him well entertained, and I know the two of them are going to have so much fun together as they grow up.
Ade often says that he thinks Charlie looks grateful and I think that’s a really nice way to look at him. He is so content and we like to think it’s because he has overcome so much, and is now just enjoying his life. It’s just mind blowing to think what he has been through, and how amazingly well he is now. From leaving hospital at 24 days old he’s never looked back. Apart from his superhero scar, you would honestly never know what he has been though. He is so perfectly chubby and just looks the picture of health!
Charlie’s follow up appointments have been so positive, with his cardiologist remarking on his “beautifully functioning heart,” so much so that Charlie doesn’t need to be seen again now for a whole year.
Although Charlie had a really tough start, he has proven what an absolute warrior he is, and we feel incredibly lucky to have such a brave, determined and special little boy. We are so thankful to the incredible medial teams who saved our son’s life.
He’s like the blackbird in his special song – he learned how to fly. And there’s no stopping him now!
Find out more about Transposition of the Great Arteries here.