Three NICUs, two countries and one air ambulance: Arthur’s journey

Arthur in NICU

I was 28+1 weeks’ pregnant when we set off on what was to be our last getaway to a friend’s wedding in Verona, Italy. Feeling fine, we boarded the plane but once up in the air I start to bleed, so after a trip to the airport doctor and with a letter in hand we headed off to a local women’s hospital. 

We arrived about 13:30 for what we thought would be a quick check and advice to rest. How wrong we were. One examination later the doctor explained that I was 5cm dilated and the sac was protruding. ‘This is very bad, your baby will be born soon,’ he told us. Not really believing what we were hearing, I was rushed to the delivery ward and wired up then given every test imaginable. One shot of steroids and magnesium were given. 

Arthur’s early arrival

The NICU (Neonatal Intensive Care Unit) doctors came to see us and one had to translate into English so we could understand. I remember very little from this conversation, just contractions and nodding along. Then the next thing I was begging for pain relief – my husband said I asked for every drug under the sun. I knew what to ask for as I’m a theatre nurse. But they don’t have gas and air in Italy and they wouldn’t give me opioids for the sake of the baby. So on we went with fresh air. (Premature birth is no easier than full-term birth as your body is not ready to give birth.) It was time to push and Arthur was born at 18:24 weighing 1.240kg so no time for the drugs to work. 

Once he was born he was put into a plastic bag, taken out of the room and put into the transport incubator. After a while they wheeled him back into the room for me to see him. He had CPAP on so it was hard to see his tiny face. We were in complete shock and I was consumed with guilt for not being able to keep him safe inside me (due to my incompetent cervix).

Life in NICU

Once we are allowed down to see our new baby boy, we sat and stared at this tiny little thing in a plastic box that we couldn’t hold and barely touch. But we knew this was our little boy that we loved so much. The first night we nearly lost him as his lungs couldn’t cope so he was intubated. On the third day he had a bleed on his lungs and again was nearly taken from us. It was then that Arthur showed us he wasn’t going anywhere and what a superhero he would turn out to be. 

After 18 days since his arrival on this earth I was allowed to have my first cuddle and boy I didn’t want to let go. But it turned out not to be, one grade 3 Ivh ( bleed on the brain) later needing surgery for his hydrocephalus caused by the bleed means no cuddles for days and the next time is daddy's turn to have some cuddles. Which i felt was Important that skin on skin was shared between us both and not just me. 

One bit of advice I would give to parents in NICU is to write a journal. This can be how you are feeling or a medical dairy. So much happens that’s it’s hard to remember it all, so take loads of photos. I have made an album of a least one photo for each day to show him when he’s old and he can see what a warrior he is. As the days, weeks and months went by we learnt how to become NICU parents. You learn all the medical lingo, the NICU routines, how to pump milk and how to care for your baby in ways you never imagined. But you know you can do it! I loved but also resented the staff as I felt they looked after and touched my baby more than I did. But I know Arthur wouldn’t be here without each and every one of those of people. 

NICU was a long and hard journey for us. We spent 108 days in three different NICUs in two different countries involving transport by air ambulance. Arthur had multiple brain surgeries, MRI, blood transfusions, infections and apneas.

Life after NICU 

Arthur today, aged 25 months

That car ride home is the scariest ride you will ever take. You are taking your most precious baby home, the day you have longed for, but it still fills you with fear. Once home you settle into a routine and learn how to become new parents in your own home.   

We have had a busy and hard time after NICU. We are now parents to a child with extra needs. He has hydrocephalus and hearing loss and CP among many other issues, like reflux and chronic lung disease. Thankfully some issue are resolving but others are life-long journeys. Days are filled with appointments but also with so much love.

You take pride in the smallest thing your baby does. It’s also very hard not to compare your child with others – you just can’t help it – even though you know they are on their own special journey.

Arthur is now 25 months old as is the happiest little boy who is overcoming so many things. He is delayed developmentally but I trust he will get to where he's meant to be. He is now sitting up and is learning how to walk with a special walker and has just started to commando crawl. We have learnt that Arthur does things in his own way and in his own time.

Thanks to Paula and Andy Bowie for sharing Arthur’s story.