"The resilience of a baby will never cease to amaze me" - Sam's story

Our eldest son was born back in March 2017. He was a full term baby, who we knew was to be born with what they believed to be a CCAM lesion on his left lung (meaning a cystic mass formed in the lung tissue). This was so large it had pushed his heart to the other side of his chest. We had been told that we may end up in NICU but that there were so many unknowns, they couldn’t tell us much about what would happen after his birth.

After an induction at 39 weeks, our son was born a day later, at 39+1. He came out crying, and therefore breathing, which isn’t something I was expecting to happen. This resulted in me assuming all was well, and that he would head off for his assessment on NICU as planned but return to me later on. This was not the case. I hadn’t noticed the deep chest recession our baby had, and therefore was unaware of the breathing difficulties he was having. It wasn’t until my husband and the doctor arrived around 90 minutes later, that I was told how much he was struggling.

I was discharged 24 hours after giving birth. And the pain I endured leaving the hospital without my baby was something I wouldn’t wish upon anyone. It was something my husband and I had to do every night for a month. A few days later, we were told that the diagnosis we had antenatally wasn’t accurate, and that our son actually had two lesions, one of which would most definitely need to be surgically removed. The surgeons admitted this was a case they weren’t familiar with and felt it necessary to send us down to Great Ormond Street Hospital, which was 110 miles from where we lived.

We weren’t expecting to need to go to GOSH again, having been there for an ultrasound of our son shortly after our 20-week scan. Our team were confident we had time to wait for a bed, but on day nine, he took a turn for the worse. It was decided we needed to go down to GOSH as an emergency case, and thankfully they found him a bed on their NICU.

We were transferred down to London at around 2am, arriving shortly before 5am. We were so grateful for the parent accommodation that was made available to us. Later that afternoon, our son took another turn for the worse, and there was talk of him needing to be put on a ventilator. This was the point in which I suddenly lost sight of ever being able to bring him home with us. I could never describe that feeling. It’s unimaginable. But at the last second, he fought back, and they settled on a CPAP instead.

He was 19 days old when he had his surgery. The surgeon agreed to decide on what to do with the second lesion during the surgery, but he was keen to leave it. Removing both lesions would have resulted in too much lung tissue being removed, and then our son would have required subsequent surgeries as he grew to ensure he had the appropriate prosthesis fitted to fill up the space of where his lung should have been. Thankfully, he decided to leave it be, and our son is still living with that lesion now.

The resilience of a baby will never cease to amaze me. On day 19 he had his surgery. Two days later, both the ventilator and chest drain were gone. And on day 22, we were transferred back to our local hospital. We couldn’t believe it. We knew we were on the home stretch at this point. Having had the CATS (Children's Acute Transport Service) team transfer us down to GOSH, we had the ANTS (Acute Neonatal Transfer Service) team take us back to our local hospital. Both teams were exceptional, and we will be forever grateful to them.

We spent the next nine days settling back into our local hospital, being back at home was also a godsend, as was being back within our support network. I decided to try and fully establish breastfeeding having expressed from the start, which was hard work and relentless at times. But I was fortunate to be able to express in the first place, given the circumstances, and later establish breastfeeding within that final week.

On day 31, we received the news that our son was ready to come home with us. Whilst it was the news we had been hoping for, it was a big adjustment to make, having had a full medical team behind us for the whole month since his birth. It was wonderful to take him home, see him in the car seat, his Moses basket and introduce him properly to family and friends. The whole experience did impact my mental health for many years afterwards, and it’s only since the birth of our second child last April, who didn’t require a NICU stay, that I have begun to come to terms with what happened.

Almost four years later, and I have a lively, sporty little boy who cannot wait to start school later this year. He is a fantastic big brother to our youngest son too. He really does continue to amaze us, and if you met him, you would never know he had such a tough start to life. We continue to be immensely proud of him.

Sam is now a blogger who runs an Instagram account called @the_nicu_mummy, which shares her and other parents' NICU experiences.