Arthur’s story #LittleHero

My pregnancy was my dream, something I hoped and longed for, something I saved to financially pay for. It was supposed to be an idyllic time where I prepared for my dream job. It wasn’t like that though. Instead, it was a blur of problems and fear and love and hope.

I knew I was pregnant 9 days after I had my two embryos put back. I was even pretty sure It was two. I’d slept with the photo of those embryos under my pillow. There were many more scans and photos to come but that one was special. I had a tricky pregnancy with a big bleed at twelve weeks that carried on until week 17. I wonder now if my body knew that Arthur wasn’t growing as he should. I like to think that my will power and love, his strength and lots of prayers meant he stuck around against the odds. At 28 weeks, I was sent to see a foetal medicine expert because they thought that Violet (Arthur’s twin) had stopped growing. She hadn’t. Instead, they discovered a complex heart problem in Arthur.

It haunts me that without this appointment, with someone who knew what he was doing, Arthur would have been born in a hospital that didn’t have the expertise to care for him and if it hadn’t been discovered straight after birth, he would have just faded away, gone to sleep and never woken. It breaks my heart to even consider our lives without him. His diagnosis led to more appointments with other specialists from other hospitals. We live in Milton Keynes. My babies would be born in Oxford at the John Radcliffe, and we would then be transferred to Southampton for surgery in the first few days of my babies’ lives. This was such a shock. All the dreams and plans I had turned to dust in a few short appointments. I am a solo mum by choice, so it was just me to handle the decisions. While my family have always supported me, these babies were mine alone.

At 32 weeks the amazing foetal medicine specialist, Dr Christos, who had diagnosed Arthur’s condition, found that he only had two vessels in his umbilical cord. This led to discussion about having an amniocentesis and the possibility of ending Arthur’s pregnancy. Two vessels and a complex heart condition led him to believe that he could have a chromosomal abnormality. I was against upset to even discuss this, because I am against abortion (for me not for others). I have always said it’s something that I couldn’t do, but I found myself having to consider it. I loved my baby more than anything and some of the things he could have had were truly horrific for him. I decided that I would rather he went to sleep inside me only knowing love than live hours or minutes in pain. The two weeks wait for these results was torturous (I had yet to experience the surgery wait) when it came back as ‘only’ complex heart issues, I cried I was so relieved. I thought his meant an easier ride. I thought they would be able to fix my baby. They said two surgeries at the most. They said it wasn’t that uncommon. I had seen things on TV. I thought it wouldn’t be too bad. I thought I was strong. They were wrong. I was wrong. It was bad and he is so much more complicated than they thought!

Arthur and Violet were born at 37+1 by planned c-section as they were both breech. They were 5lb3 and 5lb7.

My birth was as lovely as a section could be. I had asked Dr Christos, who looked after us throughout the rest of my pregnancy, if he would be delivering them but he said. I didn’t need him. This was pre-covid, so I had my best friend as my birthing partner and my mum there, to go down straight away with Arthur. I didn’t want him to be alone when I knew I couldn’t be with him. I was all set for the op. The surgeon started to introduce himself when in came Dr Christos, like a knight of old, and interrupted him mid-sentence ‘actually I will be operating today’. All the staff were shocked to see him. It wasn’t his day for theatre, but I was so relieved that my blood pressure dropped, and they had to give me medicine to get it back up. He was my first NHS hero. Many more have followed but he holds a special place in my heart. He went above and beyond to make the best and worst day of my life better, and I am forever grateful!

Arthur was taken straight to the neonatal unit. I was allowed a kiss but that was all. He should have been allowed to stay for a few minutes, I should have got a little cuddle, but he struggled from the start and perhaps we should have taken it as a sign, he would never do what the cardiologist said he would. He was diagnosed with double outlet right ventricle, hypoplastic aortic arch, atrial septal defect, transposition of the great arteries and patent ductus arteriosus. This was more complex than his prenatal diagnosis. Although I didn’t really understand that at the time. I was filled with fear and love and pain killers. We were all allowed to stay in Oxford for the first 5 days but after that they needed my bed, so Violet and I had to go home and Arthur had to stay. I was so sad to leave him, but it was the first of many nights we would be separated.

We moved down to Southampton when the babies were seven days old. The ward was amazing and – Violet and I got a room in the Ronald McDonalds house straight away. It was strange because in the neonatal unit in the hospital he was born, I had to ask to hold him and he had to be passed to me by the nurses; he was in an incubator, and they didn’t really want me to hold him because he kept having apnoea. In Southampton (he travelled without us as I couldn’t take Violet too) I found him in a normal cot with lots less wires. He looked so small, and I could hold him whenever I wanted to. My mum was with me. She stayed for the first week and returned many times. I would have been lost without her.

On the morning of their 8^th day, the ward doctors told me that he was doing really well, and they were holding off on surgery. They said I could start trying breastfeeding and my lovely nurse, Molly, said, I could get him dressed in a baby grow for the first time. Two hours later the senior cardiologists came round and said he needed surgery the next day. I was in shock. They tell you it’s going to be a rollercoaster, but you don’t comprehend how bad it will be. I remember crying all day. I held Arthur and cried. I fed Violet and cried. I saw the surgeon and anaesthetist and cried. I found it really hard filling in the consent form. The first time I ever wrote that I was someone’s mother was when I signed a form that said I understood that they could die. Molly asked if I wanted to get him dressed and I sobbed while explaining that I couldn’t, because what if I did it for the first time and it was actually the last time? Even now Molly remembers this. She said it broke her heart but mine was already broken.

I am lucky, I never really had empty arms. I took Arthur down for surgery and held him while he went to sleep. I left that room and held Violet until the surgeon came to see us 8 hours later. I don’t know how people do it without a Violet. I was given the choice not to go in with him while he went to sleep. I chose to because I felt that it was my job, I was in it for the good and the bad. The anaesthetist said it would be easier on me if I didn’t. What part of this was ever about me? After I left him, we sat in the parents’ room and I didn’t leave, except to go to the toilet, until they came to take me to see him. Other parents go for a walk, some go to the zoo, shopping or back to their room. Before I would have judged them, thought they cared less but now I know, however you get through these terrible hours that’s ok. It doesn’t mean you love them less. You just need to survive!

Arthur’s first op went as well as could be expected. They fixed his arch and put a band on, to protect his lungs from too much blood. I saw him later that day on Paediatric Intensive Care Unit (PICU). His chest was open, which I hadn’t been warned about. It was a shock to say the least. His surgeon was Italian. He was great explaining the surgery (through my tears) beforehand, but he wasn’t a great people person. His briefing after was short and to the point ‘It is done. Now we wait’. He looked exhausted. It had obviously been a hard fight. He is an amazing surgeon, and I will take that, over being good at communication any day.

We were in PICU for 12 days. During that time, I went home for one night. It was my niece’s 18^th birthday. My Mum, Dad and I have fostered her and her brother and sisters since they were small. She is mine too. PICU encouraged me to go. For my mental health, I needed to step away for a few hours. I was there from eight in the morning until late each day and up feeding a healthy newborn through the night. I was exhausted. Just before I left home to go back to Southampton, I got a call from one of the cardiologists to say that Arthur wasn’t recovering as well as they expected him to, so he needed another op. They wanted to take him to the Cath lab and balloon the holes in his heart to make them bigger. I was so upset that I wasn’t there. I got back as he was returned to his bed space. It was hard to see him so ill, sedated and intubated again. When the surgeon spoke to me before the op, he said that he didn’t think it would work, but it was worth a try and other things they could do, were nasty in comparison. In true Arthur style, he did get better. It was enough to get us to the next op. He likes to do the unexpected.

When they were 5 weeks old, we were moved back to Oxford. Again, I wasn’t allowed to stay with Arthur overnight, but they did find me a room in the Ronald Mcdonald house. It was another learning curve. I lost the nurses I trusted and the place I felt safe. We were on a general ward and I was told that there were lots of viruses, so to stay in the room as much as possible. I was feeding Violet and pumping for Arthur, who was on high calorie milk with one direct feed a day and one breast milk down his tube. The plan was that we would stay there until he was stable enough to go home. That didn’t happen. We lived in Oxford until they were four and a half months old, by which time he had grown enough for his next operation. His oxygen was never at a level that was considered safe enough to go home.

They tried a couple of times. Once we even got the car seat in the room, but he failed the car seat test. The oxygen they were giving him made no difference to his saturation levels, so eventually they decided to stop it. I fought to be able to breastfeed him during the day and after speaking to a different cardiologist, I worked with the dietician and we made a plan to try. I fed him every two hours from 6 weeks with tube top ups. He is so lucky to have Violet who is a great feeder and established my supply. I became weight obsessed. I learnt all the calculations and had a dietician who supported each and every plan we made. The cardiologists were not happy about this but as long as he gained they couldn’t say much. At home this became known as the battle of the boob. Eventually, we made it to the required weight for the next surgery. Then another different cardiologist decided that as he had seen him take a bottle of EBM when I wasn’t there, he didn’t need the feeding tube and took it out. It was a terrible idea. They wanted to put the tube back in because of weight loss but I said ‘no, we have to find a way forward’. It was the only time I was truly difficult. I breastfed and eventually, he regained the weight he had lost. Since then, we have stayed together wherever and whenever allowed. I breastfed till 2 years, because the policy was that I could have both on the ward overnight if I was still feeding.

After the tube came out, Arthur, Violet and I had a lovely time pretending we were normal. We went off into the local shopping area with the buggy for coffee, sat in parks, went out for lunch and did some shopping. It was lovely.

When we got to Southampton for a CT scan and the preparation for the next surgery, we just carried on doing our own thing. Breastfeeding was always a better way to feed Arthur and his saturation levels had always been best when we were left to it. His Sats (Oxygen Saturation) were stable for the first time and we were totally self-sufficient. After a few days of being on the ward in Southampton, they decided that we were so self-sufficient, we could go home for a bit. It was a gifted month before he started to deteriorate, and our cardiologist Dr Jones called time on it. It gave me the strength to get through though. I slept in my own bed, shared my babies with friends, walked my dog and spent time with the other children who I had barely seen.

I arrived for his next surgery refreshed and empowered. It was to be his last one, but in the end, they decided they weren’t doing that operation anymore. They had used the CT scan to create a 3D model of his heart. It was way more complicated that they thought and the op wouldn’t work. Instead, they were doing the Glenn procedure which is for children with half a heart. I went from just having to get through one more operation to God knows how many and from a normal life expectancy to the unknown. I was a wreck. It turned everything upside down.

This operation was reasonably routine for the surgeons and Arthur was much bigger, so it was expected to go well. We all forgot to take into account Arthur’s very own plans. He didn’t recover as they had expected from the op.

The day after his operation, his pressures were all too high so they made the decision to take him back to the Cath lab. When they got him in the lift to theatre, his pressures dropped back to normal. He recovered well but slowly and after 6 days we made it back to the ward. They put him in a room because he had a cold. They put a cot in it for Violet so we could stay together. I was very pleased but really, he needed to be in high dependency unit (HDU) and I needed to sleep because I didn’t for days. He needed Airvo at a high level and was withdrawing from drugs which was hard. He didn’t recover as quickly as expected and he couldn’t get off oxygen. His lung partially collapsed so he had antibiotics for that. Eventually they did an X-ray and discovered that his diaphragm wasn’t working properly. It turned out that his diaphragm wasn’t just not working, it was actually pushing the air up and out of his lung when it should have been expanding. They also discovered that he had a narrowing in his right pulmonary artery and in his Glenn. They needed to balloon the Glenn and put a stent in his artery. The next day, they took him back into the Cath lab to sort his heart out. Then he went to PICU and remained sedated and ventilated until they could take him to theatre to fix his diaphragm. It was a long, long day.

This was supposed to be our easiest recovery. Nothing cardiac involved. Instead, this would be one of our hardest times. By now, it was the end of November and we had been in since the beginning of October. Because it wasn’t a cardiac surgery, they assumed that this would be a short stay in PICU. They were wrong. On day 2 they decided to extubate. This was probably one of the hardest things I have ever watched. I have always made a point of being there when he wakes up because I was the last thing he saw, and I wanted to be one of the first. This was a failed extubation and I can still see it in my head like a video on a constant loop. He started to struggle. They thought that they could manage this with breathing support but they couldn’t. I sat down and started to feed Violet, tears pouring down my face. I watched my child go blue and lifeless. They lifted him to reposition things and his arms dropped down like he was dead. It is an image that haunts me.

We waited another two days to try to wake him up again. Next extubation was successful and I could hold him again. Most parents only get ‘first’ hold once but a cardiac parent gets lots of these. It’s the same feeling as when you hold your newborn for the first time. That sense of awe, the welling up of love and the gratefulness that they are there. That wasn’t the end of our troubles though. They did a routine x-ray and discovered that his lung had collapsed. They put him back to sleep for another 5 days. I watched a bronchoscopy and saw the inside of his lungs again while feeding Violet. A few days in, the fluid in his drains changed colour. I’d seen it before on a friend’s child, so I knew what we were heading into. Chylothorax – every parent’s nightmare. It’s when fluid builds up around the lungs. This fluid has to be drained and is actually fat. To stop it the baby or child has to go on a low-fat diet for 6 weeks. By this time we had been diary free for three months and the only fat free milk they have is non dairy free. We had no option but to carry on giving breast milk, although we did fat skim the milk and I was on a low fat diet. It was the beginning of December and my one wish of being home for the babies’ first Christmas was gone. They said we weren’t going home. Christmas is a big deal for us and Arthur is actually named after the film Arthur Christmas, which we watch together every Christmas Eve. I was devastated but we had other struggles facing us, so I just had to get on with it.

We moved back on to the ward. This time we didn’t go straight into a room. I hated having to leave Arthur at HDU but this was better, as I got some sleep. But Arthur was not happy being separated and they struggled to calm him, so we were quickly back in our room all together. This time our biggest battle was withdrawal. It was horrendous. Morphine can be really hard and for us it was. After 3 nights with no sleep and having to have him in the sling, while on oxygen, and care for Violet I had to call Mum for help. They also decided to sedate him overnight because he needed the rest. During this time, there were hours when the nurses took Violet, and I only saw her to feed her. They couldn’t do anything for Arthur, he only wanted me and so they took her to help. They were amazing and looked after all of us.

Just as we were getting better, Arthur got a cold and ended up back on oxygen. We were all in a bay together by now. At 3 am they woke me up to say that Arthur has RSV (dangerous to other patients). We were back in our room and I wasn’t allowed to leave it. The nurses who had become our friends and visited for chats regularly stopped coming. Anyone who entered did so in full PPE. Arthur recovered quickly as he had been vaccinated but I lived in fear that we might have given it to the other babies. As we weaned the drugs, Arthur became more himself, the drains were removed and we started a careful diet of low fat food. If we could get off the morphine we might go home for Christmas. We only had a week left. On Christmas Eve we made it home. It was the best present while also being terrifying.

That is the end of the first part of our story. During lockdown we have had two birthdays and hidden from the world for 18 months. My babies have learned to walk and talk/sign. We have faced weight gain issues, viruses, Covid scares and lows Sats but all at home! Home is definitely the best place to be. My babies never cease to amaze me, and I am lucky in lots of ways to have missed nothing because of Covid. I have been here for every step and word. Being in lockdown at home, surrounded by my family, in a house and not a tiny hospital room wasn’t so bad! My mental health is a struggle and I still ‘fake’ it a lot but we get by. I have PTSD but haven’t had therapy yet, as I haven’t been in a place where I feel I could completely fall apart. It has become a battle. I fight daily. I made a choice in the beginning to make each day as happy as I could for them. This means I have become a pretty awesome actress. I don’t want my children to grow up thinking that me crying in the corner all day, every day is what life is about. I wanted them to be happy and well adjusted even though I knew I would be raising them in hospitals and dealing with situations that would be challenging.

‘Fake it till you make it’ has become my mantra and my tears are often hidden by the sound of the shower. My level of anxiety is high. The babies still sleep on sensor monitors because I am terrified, they will die while I sleep. What I didn’t realise was that my anxiety would transfer to Violet as well. I am as anxious about her as him. Arthur is currently running around the living room in a woolly winter hat (it’s August) and a pair of large black washing up gloves. He is a force to be reckoned with, a warrior who has fought through so many obstacles and whose character and personality has always managed to shine through. Between him and Violet, I’ve never been so busy or so happy. I’ve also never felt such fear and anxiety or such love and pride. I like to think I was chosen to be Arthur’s Mum because I was the right person to fight for him and fight with him for his future.

I have to hope that I have more strength than I believe. If Arthur was given to me for a reason, then so was Violet. She is the light that has got me through so many dark moments. If I am his strength, then she has been mine.

Written by Julia (mum)

You can follow Arthur’s story here.

If you would like to share your #littlehero story, please email Dora on hello@medapti.co.uk