Hari and Macsen were born via emergency C-section on 15th December 2023. We had been having weekly scans throughout the pregnancy to monitor their growth due to suspected Twin-to-Twin Transfusion Syndrome (TTTS) and had been told that we would not be allowed to go past 32 weeks, so we were already primed for spending some time in neonatal care.
Unfortunately, at one of our scans, Macsen’s growth had slowed down and we had to make the difficult decision of whether to deliver early at 29 weeks or try to give them longer but this carried a huge risk of losing both of them. We opted to deliver them and they came 24 hours later after we were transferred to another hospital.
There was a team of neonatal staff for each of the boys, plus the medical team for myself so there was around 20 people in theatre with us. I remember everyone and everything about that room very vividly. Every person who spoke to me, or held my hand is etched in my memory.
The boys were delivered very quickly and taken to be worked on straight away. My husband was allowed to take some photos whilst they continued working on me. I was given Hari to hold in a plastic bag (for warmth) for a minute before he was taken to the ward. I was taken into recovery where they brought Macsen to me and I was able to hold him very briefly, probably less than 30 seconds, before he was whisked away. I remember the nurse was so apologetic that it couldn’t be any longer, but I sensed things weren’t great and knew he needed to go with them.
My husband went to see them before went home that evening. He still says it was the worst day of his life, leaving us all in the hospital without even being able to hold them. I went to see them at 6am the next morning, and I will be honest, I didn’t feel like they were my babies. I didn’t know what to do, how to help them, what to say. It was awful. It was more than 24 hours before I was able to hold Macsen again and 48 hours before Hari could be held. My husband didn’t hold either of them for 3 days.
Macsen was just 2 lbs 2oz and Hari was 2lbs 11oz. We were told to expect to be there until their due date, which was 27th February so we knew we had a way to go. Our experience for the first few weeks was relatively smooth, if any neonatal journey can be called that. The boys weren’t ventilated but were on different forms of oxygen for the first few weeks. They had to overcome what are typically, very common hurdles for premature babies such as feeding issues, PDAs, extreme reflux, infections etc. After 6 weeks, we were lucky enough to be making plans to go home, with Macsen on a feeding tube but otherwise, they had gained weight, were feeding well and everything looked good. Staff were amazed at how well they had done.
Unfortunately, it was not meant to be. Macsen started showing signs of anaemia, so they planned for a transfusion the following day. Following this, I was able to hold him and just felt like something just wasn’t right. I called a nurse and within minutes he was being taken to ITU and intubated.
This was the start of the worst time of our lives as Macsen battled NEC (Necrotising Enterocolitis) and sepsis, spending two weeks nil by mouth, on a ventilator, being pumped full of antibiotics and morphine in the hope that he would pull through. There was nothing we could do but watch and wait. We didn’t hold him at all during those two weeks, all we could do was hold his tiny hands and talk to him through the incubator.
We moved onto the ward into one of the parent rooms and we were allowed to keep Hari with us until we knew whether Macsen would make it. Once he was over the worst and he was taken off the ventilator, we took Hari home after 63 days in neonatal care. This meant we now had to juggle having a newborn at home and one in the hospital for another month, which was challenging! Thankfully, after gaining weight and getting his strength back, Macsen came home after 94 days.
