Zach’s first operation – Meeting the surgeon

The ward was quiet that morning. I felt that everybody seemed hushed and subdued. Either that or I was blocking everything out. It was sunny and the big glass windows at the back of the ward were letting in huge amounts of light. I was still in my pj’s. The morning was progressing quickly and I had again only had a few hours sleep. The nurses seemed to be off in other areas. Their desks sat quietly, folders dotted around and cups of tea that looked cold sat untouched. The small room that sat across from the nurses’ station was also empty today. There are usually doctors milling around in that area constantly, but today nothing. I was anticipating Zach’s surgery that day, but the day just seemed to be dragging along. I had no clue as to how the next steps would look. I was lost in that tense before moment. Like Christmas eve, but a lot less fun.

I was breast pumping on one side when the surgeon came to visit me. Zach was asleep in his cot. He pulled up a chair and sat next to me. He introduced himself and got directly to the point. He is a very handsome faced man with a very well-kept appearance. A serious but kind nature to him.

He told me that he would be performing Zach’s operation today. He told me briefly what he would do. He would be taking a piece of donor tissue and using that to reconstruct the ‘arch.’ I asked him to repeat what he had said about a donor. He nodded and replied “yes a piece of tissue from a donor’s heart” I had no idea before that moment that Zach would have somebody else tissue inside of him. What I thought about it later it was pretty amazing to think that one person who donated their organs would be able to save hundreds of babies with just one heart. It was only a small piece of tissue needed and so one organ could help many babies. I was astounded! I didn’t show that. I kept my poker face together and just nodded, still slightly dazed that this was finally happening.

He continued to explain that Zach would go onto a heart bypass machine. This means that the heart doesn’t pump the blood around the body for some time, a machine does the job instead. To use a bypass machine a certain amount of blood has to go through the machine. Babies don’t have enough of their own blood for this process to work. So, Zach would need some blood from a donor for that process to happen. I knew he would be on bypass but I had no idea that he would need blood. So, I offered mine. I knew we were the same blood type. The surgeon kindly explained that that would take a lot of time. I would have had to give blood weeks ago to do that. But being pregnant with Zach of course that wouldn’t have worked either. So, I had to settle for what I was being told. Again, I nodded and kept all the emotions inside. I was concentrating so hard on what he was saying to me. He told me that after the operation he would call me straight away to let me know how it went. I thanked him for offering this. He handed me the consent form and ran through the risks. Bleeding, infection, death and re-narrowing of the arch in the future – needing more surgery. The risks, of course, were not great but Zach simply wouldn’t live without the operation so there wasn’t a question involved here. It was just knowing. I signed the paper with shaking hands. He asked me if I had any questions. I looked away from him and paused. My mind was blank. I turned back “just look after my baby boy for me.” I said and finally, the tears came. “I will” He answered and stood to leave. I said thank you a million more times as he nodded goodbye. I then looked at Zach asleep in his cot and cried.

Still holding onto the breast pump machine in one hand I stood up and leaned over him. I stroked his little face. I looked at every single tiny inch of him just in case I would never see it again. I leaned in further and smelled his hair. I wanted to hold everything in my memory in case my little boy was taken from me. In case he wasn’t meant for this world. He started to stir and wake. I detached myself from the pump and lifted Zach to me. Taking his wires and blankets with him. I held him so tightly as I cried over his tiny body. I kissed him all over his face and rocked him until he fell back to sleep. My perfect little boy. His face was so round and adorable. His perfect little fingers. His chubby arms and round shoulders. His perfect little chest…Inside was a broken heart. How could someone so perfect everywhere else have something so majorly wrong. I held my hand over his chest and felt his heart pumping away. It was only able to do so because of the drugs that he was on. The fast pumping flutters hit against the palm of my hand. Keep beating little one. Stay with me. Just for me. I will always be here for you if you want to stay. It’s up to you baby. I will hold your hand if you want to stay. I said inside my head as if he could hear me. He snuggled in closer to me and rolled his little lips together. That was enough for me. If you want to stay sweet Zach then I will be here. I laid him down softly in his cot and found myself some tissues. The only thought that comforted me was that it was up to him. His little soul or spirit, however you like to think of it, needed to decide if it wanted to stay here with us and in this body. I don’t know why but that was just how I thought of it. It was up to him now. Just the same way he had told me his name when I was in the early months of pregnancy. He would let me know if he was going to stay or not. If I got to take him home or not. Taking in a thought like that is pretty impossible. Especially in such a high-stress environment. So, I just focused on what I needed to do there and then. I called Emmanuel to tell him that the surgeon had just been. He would be gutted to have missed it but he didn’t say anything. He told me he was on his way over.

I sat and waited, just staring at Zach and expressing breast milk. I couldn’t do anything else. Just sit and be with him. He was born on the 18th of February 2020 and his operation was the 27th February 2020. He was just ten days old. Please, please let me have more than just ten days. I spoke in my head to myself, to the universe. Who knows? Please, please just let me have more than ten days with him.

The Savannah

When Zach was born, we were in the neonatal intensive care unit and then the HDU neonatal unit at St Thomas’ Hospital. We then moved over to the HDU on the Savannah ward at the Evelina Children’s Hospital. Its very confusing, but the first HDU is next to the labour wards so parents are next to their babies. Savannah is a part of the Evelina hospital – in a whole other building!

We were moved to the Savannah ward late one evening in the first week of being at the hospital. Myself and Emmanuel call the Savannah ward, The Jungle. It is pretty wild. Imagine a large room with six cots all containing tiny babies. Next to the cots are the worried parents and walking back and forth between them are the nurses and doctors. Each bay has a blue curtain that pulls around your allotted little space. Inside that space, that is perhaps the size of a small shed, are two chairs a storage cabinet, a table and a mountain of medical infusions and monitors. Plus, two suitcases, three bags, breast pump equipment, shoes and a coat. Then imagine living in that space whilst trying to breastfeed your brand-new baby. The nurses have their desk area right next to the first cubicles. There is also the doctor’s office, scanning room, toilets and shower. It was as Emmanuel called it ‘The wild, wild west.’

When it was time to move across, we were walked from St Thomas’ to the Evelina with our two nurses and a student nurse. It was the first time Zach had seen the outside world. He looked around from his cot as we passed through glass corridors, taking in the blue sky, before falling asleep. He then slept for the rest of the walk. We were taken through the old part of the hospital where they have the teaching areas. There is a display case of old medical equipment. ‘The iron lung’ and other old ventilators. They looked like torture devices and sent a shiver down my spine. It made me think that medicine had a pretty brutal history. Street doctors that hacked off limbs and dentists that pulled out teeth with big metal plyers. What about the people that had been hooked up to those old machines, had they lived? Had any of this horror movie looking stuff worked? A movie scene popped into my head; the man had been strung out by his organs but he was being kept alive by machines. His intestines hanging on hooks. His heart beating out in front of him. I physically shook my head and tried to concentrate on Zach. He looked peaceful in his cot. Like an emperor on a travelling throne being brought across his land. All these people here for him and he was blissfully sleeping.

We arrived at the Savannah. As Emma and Emily dropped us off, I hugged them both. I had grown very attached to them in my days in the HDU. Our Savannah nurse came over to introduce herself. The HDU nurses were explaining to her about Zach’s medication and infusions. My heart quickened. Why didn’t she know this stuff? Were we safe here? Was Zach’s careful care going to be messed up? I started asking questions. My anxiety started to rise. In HDU you have two babies per one nurse. Here the nurses can have three babies at a time and there are six bays. I was so scared that something was going to go wrong. I was becoming prickly; I didn’t know how things worked here. A heath care assistant came over to help us ‘move in’ and when she started to move the breast pump machine out of the way to get to the plugs behind it I started almost yelling at her.

“I NEED THAT, you can’t take it!” So, I wasn’t quite yelling, but I certainly wasn’t nice to her. She explained that she was just moving it. I thought she meant moving it away from my area so I continued to tell her that she can’t. Emmanuel stepped in to explain what the lady meant. I stood back and let her finish. I felt awful. She was only trying to help me. The next day when I saw her again I apologised for how I had spoken to her. I explained that I was really unsettled being moved across and I was just feeling really anxious. She was lovely and thanked me for apologising. We actually got on quite well and started joking with each other about miscommunications. I didn’t see her much after this, but I would smile at her when she was around and she to me. “Well done.” My mum said to me after I apologised to the woman. It doesn’t matter how old you are but hearing well done from your parents always means something. “Thanks mum, she really didn’t deserve how I spoke to her. It was only fair.” Yes mum, I am a grown up after all!

Each bay has a pull-down bed next to the patient’s bed for a parent to sleep on. It is tucked into the wall. It is a few wooden slats with a thin foam mattress on top. It reminded me of the mats that you get in sports halls for PE. Where you line them up and do forward rolls and cartwheels across them. They are great, but not for sleeping on.

When the nurses switched over and our night time nurse came over she offered me a proper hospital bed in the bay next to Zach’s. There was nobody in there and she knew I was just a few days post-surgery myself. I could have kissed her. She pulled the curtains around us to make one big giant bay. For the first time I got to sleep next to my baby boy. The hospital beds elevate at the head end so that I could sleep sitting up. After a C-section it is extremely difficult to sleep laying down. It’s difficult to do anything to be honest, but laying fully flat is agony. So, there I was a new mum sleeping next to my baby for the first time surrounded by four other mums and babies all cocooned in blue curtains. The thing about the blue curtains is that they don’t block out any noise. So, all night long you can hear the nurses, the other babies and parents shuffling around. Of course, when one baby cries in the night so do all the other babies. It’s like they play tag with each other. ‘You start crying first this time and I will for the next round. Then we can take it turns like a dawn chorus so that nobody gets any sleep.’ I imagine this is what the babies were up to. So that first night I managed about an hour. 

The best thing about Savannah ward is the breakfast. When hand over is just finishing and all the curtains are being opened, the breakfast lady comes around and she says these magical words “Toast or cereal?” I always had toast and a cup of tea. The toast was cold and the little pots of butter and jam were those plastic kinds that taste more like sugar, but it was delicious! After hardly any sleep and facing a day of uncertainty on the ward, tea and toast just made the world better for a brief moment. In fact, tea and toast become something that I relied on. When Zach was awake at 3am and not settling. Or they came at midnight or 5am to take yet more bloods from his poor feet. I knew in a few hours that I was going to have five minutes where I could eat some jammy toast and drink some very strong milky tea. I often ate it one handed whilst holding Zach. Or Emmanuel would feed it to me if I had no hands free and he had arrived early. It’s the small things that become crutches. It’s the small details that make the long days and weeks bearable. They also fed the breastfeeding mum’s lunch and dinner. I didn’t always eat it but it was a small comfort to know that I would have hot food there at 8am, 12 noon and 5pm.

The only other thing that’s better than the tea and toast in the morning is when you have had a particularly bad night or early morning and one of the nurses brings you tea and toast accompanied by a listening ear.

The first day on the ward my mum was still in London so she stayed with me all day. She was there as I fed Zach constantly. She helped me as I cried because he just wasn’t getting enough. She listened to me moan all day long. There really wasn’t much she could do but at least she was there. Emmanuel had to go and sort out a big food shop for us and take It back to our accommodation. He also had to unpack all of our suitcases and organise our room where we were staying. I am so glad I had my mums’ company that day. But at the same time, I felt so bad for just being this big mess. This definitely wasn’t the happy day with their grandchild that most grandparents dream off. It was so handy having her there though. When I needed to go to my own appointment the day after. Mum and dad sat with Zach whilst Emmanuel took me across to St Thomas’ hospital so that I could see the midwifes. They sent a picture in the family WhatsApp group of Zach in his cot. ‘First babysitting duties’ was the caption. Mum and Dad stayed for a week in total. It was perfect, they were there when we couldn’t be. They sat with Zach we had to do other things. My mum was a friendly face in the sea of nurses when I was trying to feed and change him. Sometimes you do just need your parents. Myself and Emmanuel soon felt ready to do this with just the three of us, as a family. When Mum and Dad went back home we were ready to try to handle this all ourselves. I will always be grateful that my parents got to see Zach when he was so little. Soon his other grandparents would meet him as well. It really meant so much to me for them all to come to the hospital to be with us.