Arthur’s heart condition, transposition of the great arteries (TGA), was detected at mum, Ellie’s 20-week scan. After a scary start, he’s now doing well. Read their story here:
Tiny Tickers and the resources they provide have been completely invaluable to us, especially throughout our pregnancy. A few months after our diagnosis, Tiny Tickers posted a photo on their Instagram of a team of sonographers they had recently trained and there was our sonographer!
Without Tiny Tickers, our story could have been very different and we are so, so grateful for the training and awareness they provide. We have decided to write Arthur’s story because the ‘your stories’ section of the website gave us the hope we desperately needed during our pregnancy and if we can give that to just one pair of expectant parents, then it was totally worth it.
We couldn’t wait for our 20 week scan! I had pretty bad morning sickness for the first 17/18 weeks of pregnancy so was just so happy to start feeling normal again!
The sonographer was chatting away to us until she got to baby’s heart. She then became quiet. In all honestly, neither me, my husband nor my mum were concerned. We were just fascinated by the little baby wriggling about on the screen!
After checking everything else, she asked us to take a walk around the hospital to try and get baby to move. Again, we thought nothing of this as it had happened at our 12 week scan too.
When we returned, my heart just sank. Our sonographer had been joined by the lead sonographer and, as we walked in the room, they were looking at our scan photographs on the screen.
After another 10-15 minutes of the second sonographer scanning me, the silence was broken with the words, “There is something wrong with your baby’s heart.”
We were then taken into the kind of room you never want to find yourself in – two sofas and a box of tissues. A specialist midwife came through and explained to us that our local hospital was unable to offer a diagnosis and I would need to be referred to the nearest cardiac centre, which was Leicester.
There was another measurement they weren’t happy with, which was the nuchal fold on the back of baby’s neck. Rather than referring us straight to Leicester, we had to attend a fetal medicine scan at Nottingham first to rule out any other anomalies.
We had a scan the following day in Nottingham. The consultant was happy with everything else and just wanted to refer us for baby’s heart.
The next day, we were in Leicester. They scanned baby’s heart for around an hour, and it was confirmed our baby had Transposition of the Great Arteries (TGA) and a VSD (hole in the heart). Our baby would need to be born in Leicester and have surgery within the first week of life. It was overwhelming but the cardiologists were positive that, with surgery, our baby should go on to live a normal and full life.
The rest of our pregnancy was hard. We knew how lucky we were to receive our diagnosis antenatally, but it took away any excitement we had of expecting our first baby. Although we had decided before our 20 week scan that we wanted to keep the gender a surprise, following our news we decided to find out that we were having a little boy. I had always (secretly) wanted a little girl but as soon as we found out we were having a boy, we were absolutely over the moon and it really did help us get excited again.
There were a few scares of reduced movements but I had an absolute dream of a local midwife who would check in on us regularly and made it all so much easier.
Due to the COVID-19 pandemic, our visit to the NICU unit at Leicester was understandably cancelled. A call was scheduled instead so we could chat with the team there about what to expect. On the call, we were told that due to the pandemic, our care was being transferred to Birmingham Women’s Hospital and baby would be treated at Birmingham Children’s.
I cried all day. I had finally got my head around delivery in Leicester and had heard so many stories about how amazing they were. Now everything had changed and we were to give birth almost two hours away from home!
We had a growth scan booked in at Birmingham at 34 weeks. I now had to attend all appointments alone, so was really nervous. The team at Birmingham could not have been more supportive.
A specialist midwife scanned me first and spent so much time trying to get a good image of baby’s face to show my husband. I was then scanned by Arthur’s cardiac consultant – one of the kindest people I have ever met and one of the heroes of Arthur’s little story.
He confirmed that baby had Simple TGA with an intact septum, so no VSD after all. Although in one way, this can be seen as a positive (it’s one less thing to deal with), a VSD can actually be a good thing for a TGA baby as it allows blood to mix, so babies are usually a little more stable following birth.
Our consultant remained positive, however he did stress that the first couple of hours would likely be much more critical. He expected our baby to be born blue and they would likely need to transfer him straight to the Children’s Hospital for a balloon septostomy to allow blood to start mixing.
To add to the worry, Arthur had decided to turn breech and due to his condition, they would not attempt to move him. In the space of a couple of months, we had gone from a natural birth in our local hospital with both my husband and my mum there, to a planned section in Birmingham with only one person allowed for birth and recovery. Again, it was a lot to take in, but we had full confidence in Birmingham.
Arthur was born at 11:05am on Tuesday 26th May, weighing 8lb 2oz. We saw him briefly over the curtain before he was whisked away to NICU and ventilated almost immediately due to extremely low oxygen levels. I had given one of the lovely midwives my phone before we went through to theatre and she got some amazing photographs of Arthur.
My husband and I sat in the recovery room with tea and toast, staring at photographs of our little boy. We were so so proud (and surprisingly calm!)!
After around half an hour, a consultant came up from NICU and said that, due to Arthur’s condition, they wanted to transfer him to the children’s hospital as soon as possible for the keyhole operation. He wondered if we wanted to go and see him first.
They wheeled me in to see him in his little transfer cot, covered in wires and I remember just thinking how healthy and pink he looked! I took the opportunity to ask my husband to take as many photographs as possible of him – he was so perfect.
We then had to consent to him being moved. The transfer consultant explained to us that, although it was risky to move Arthur in his condition, there was nothing that could be done for him on NICU and he needed the specialist team at the children’s hospital. We of course consented.
I was taken away to a private room on the ward while Conor followed Arthur’s ambulance to the children’s hospital.
The rest of the day was still pretty calm. My husband called me every hour or so to give me an update on what was happening.
Arthur went down for his balloon septostomy that evening and was out within a couple of hours. The procedure was a success and the consultant was happy that blood was mixing sufficiently. This should stabilise him until his operation in the next few days.
The following morning is up there with one of the worst days of my life. My husband called me at around 7.30am. I was so excited to hear from him and see how Arthur was doing. The wonderful children’s hospital had arranged accommodation in nearby apartments for my husband (and me once I was discharged). Conor had been called back from the apartment to the intensive care unit, as the team feared the worst for our Arthur.
They were struggling to maintain Arthur’s blood pressure and after trying a few things, Conor called me to say they were putting Arthur on life support. The consultants gave Arthur a chance of survival on the ECLS/ECMO life support of 50/50 and without the life support 20/80.
I was now stuck on my own in another hospital, completely helpless, knowing my husband was going through this alone and my baby, who I had only met for 15 minutes, was so poorly. The midwives at the women’s hospital worked hard to get me discharged as soon as possible and my husband came to pick me up.
I was less than 24 hours post C-section, so my husband was allowed to help me to the lift but then had to leave me there as you were only allowed one person at a time in the children’s hospital.
As I got to the reception desk at PICU, I explained who I was and I will never forget the look on the receptionists face. She made a phone call and ushered me to another one of the rooms you never want to find yourself in. She told me I was allowed to call Conor back and she was going to ask a consultant to come and speak with us.
While the procedure was taking place, we weren’t allowed on the unit. We instead stayed in the room and a cardiac liaison nurse came to speak with us. She was so so lovely, but tried to prepare us for what we were about to walk in to. She warned us that the ECMO machine is really the last resort and it is as poorly as you can possibly be. The trouble with Arthur was, they had no idea what was causing this loss in blood pressure. His lungs were perfect, his heart was as expected and the only thing they could suspect was sepsis, but even this was not confirmed.
After a couple of hours, the consultant came through to tell us we could go and see Arthur. Nothing could have prepared us for what we saw. The surgeons had opened Arthur’s chest to place him on the ECMO machine, his chest was left open and he was covered up to his chest with a blanket which covered more tubes and wires than I had ever seen before. He even had wires attached to his tiny little head.
Arthur remained pretty stable on ECMO over the next couple of days and as the consultants would put it, he had a ‘good run’ on the machine. He had some kidney damage, which meant he was placed on dialysis too.
After a day or so, we got the chance to speak with Arthur’s surgeon, who was still determined to continue with the surgery as she reminded us Arthur’s heart condition was ‘incompatible with life’. She was absolutely incredible and we owe her everything. I wish I had met her during our pregnancy – she was straight to the point and was completely realistic about the situation we were in with Arthur. However, she still instilled so much confidence and we knew, if anyone could save Arthur, it was her.
My husband and I decided to sign the consent form for Arthur’s open heart surgery together and I will never forget the surgeon’s note next to ‘intended benefits’ was ‘survival’.
When surgery day came around, Arthur was five days old. Like all parents, we were dreading surgery day, but we knew it needed to happen and, as we still had no idea what had happened to Arthur with his loss of blood pressure, it really was our last hope.
All I could think on the morning of surgery was that I had never held my baby. He was five days old, going for surgery on his tiny little heart and he didn’t know how it felt to be held.
The nurses that went into surgery with Arthur were so kind and even arranged for me to ‘hold’ him (manoeuvring the wires and tubes so I could put my hands under his little body). We had a photograph taken as a family of three, which we have never shared with anyone.
Because Arthur went into theatre on ECMO, we were unable to accompany him. So instead, we kissed him goodbye at the entrance to PICU.
After six long hours, we received the phone call. Arthur was back from surgery and off the ECMO machine. I don’t think either of us have ever moved so quickly!
We went straight up to see Arthur. He was so pale and looked tiny but we were just so relieved to see him. His surgeon described his heart as ‘beautiful’ which I will never forget.
The following day, Arthur began to struggle again with his blood pressure and his heart rate would keep shooting up. My husband and I were offered the emergency bedroom on PICU and we took it in turns to sit with Arthur as his condition was once again considered critical. All I could think was, ‘They’re going to put him back on that awful machine.’
After that night (and it really was a scary night), we slowly started to see improvements with Arthur day by day. We had a few other scares, but his numbers were stabilising and five days following his surgery, Arthur was extubated and began breathing on his own for the first time since he was born!
Our little warrior was off PICU and on the cardiac ward seven days post surgery.
I found the ward so hard. You go from at least one nurse at your baby’s bedside (at least two when they’re on ECMO), to your baby being in their own side room. It feels so laid back compared to PICU.
We had a few more ups and downs on the ward, including some issues with Arthur’s heart rate/rhythm, but the surgeons were confident this was just part of everything settling down.
Arthur was treated for an infection in his scar and a few issues with his tummy. Once we eventually got him to tolerate expressed milk through his NG tube and then from a bottle, we were able to establish breastfeeding and discharged a couple of days later. Arthur was almost four weeks old when we got home.
Arthur is now eight months old and he is the sweetest, most contented little boy! He truly is our little warrior and I am filled with overwhelming pride every day that I’m his mum.
Neither me, my husband or our family have ever relied on our NHS as much as we did in 2020. I am in awe of what our nurses, doctors, sonographers, surgeons and all other healthcare workers do every single day. From the very start of our journey, we could not have been looked after any better. We had our 20 week scan on the Wednesday and by the Friday we were three scans down the line with an official diagnosis.
The support and care we continue to receive from Birmingham Children’s Hospital is incredible and we will never be able to thank their staff enough for what they have done for us.
If you have found yourself reading Arthur’s story then chances are you have received a diagnosis and if that is the case, I am so sorry this has happened to you. Overnight you will have found yourself plunged into a ‘medical world’, completely overwhelmed with information and forced to face this journey whilst still juggling daily life, work and possibly pregnancy.
There is no right or wrong way to handle your diagnosis, you will most likely find yourself questioning whether or not to put together your nursery or to buy any more clothes, whether to tell people or to avoid it in case you make them feel uncomfortable.
What you will find though, is that you have a strength in you that you never knew you had. I honestly didn’t believe I had it either until Arthur was here and now I know, I will use that strength and fight by his side for the rest of my life.
My advice would be:
Try not to Google. Only use reliable sources to find your information – this is just one of the many reasons Tiny Tickers is such a massive support. Their website provides so much useful information and will only point you to other reputable sources.
Arthur’s cardiac consultant (actual hero) has really taken the time to get to know us as a family, he knows I need to know and try to understand EVERYTHING. When Arthur goes for his check-up ECHOs, he talks me through everything, pointing out the different parts of Arthur’s heart and explaining what is happening. Your baby’s consultant/surgeon will run you through all of the info you need, including factual statistics and risks (as will your cardiac liaison nurses). Spending time burying yourself in pages of Google will blow your mind and quite frankly terrify you.
Specifically, if you find your child requires ECMO, their medical team will have talked you through all associated risks, there are A LOT and this for me was one of the hardest conversations we had along the way. As I have mentioned above, please do not Google. It is completely natural to want to gain as much information as possible and I know that works for some parents (me included) but with the ECMO machine, I found it best to accept what the professionals told us and not dig any deeper. The machine is scary, and the statistics are not great, but it saved Arthur’s life and it has saved so many other babies and children (including two other beautiful babies we met along the way).
Finally, TALK! We are incredibly lucky to have an amazing family – they have been there for us every step of the way. We have also met so many amazing people along our journey, most of them in hospital and some through social media. In spite of what they are going through themselves, they still took the time to check up on us and more often than not, be a shoulder to cry on.
We are all in a position that no parent should have to be in but that is exactly what gives us the understanding to listen to one another.
Find out more about transposition of the great arteries here.
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