Nothing prepares you for seeing your tiny baby covered in tubes

We’d been trying for 9 months so I had to do a few tests before I really believed we were pregnant, then it felt like a dream come true. 

The pregnancy all went fine, until the point it went wrong.

I was just under 22 weeks when I woke in the night desperately needing the toilet. I felt fluid dribbling but just assumed it was normal, pressure on my bladder. That happened 3 times, but then I had a tiny bit of cramping so called my GP. My urine sample came back clear but she prescribed antibiotics for a urinary tract infection just in case.

The trickling continued, then, at a 24 week midwife appointment they said baby was a little small and sent us for a growth scan where they found there wasn’t much water around him. I was referred for a consultant scan but, that night, had a bit of a bleed so went to the hospital where they swabbed me and said my waters had probably broken 2 weeks earlier.

I knew it happened, Mum had been through something similar, but I didn’t really understand what it meant for me and baby. After an overnight stay they sent me home with antibiotics.

I went for a consultant scan a week later which was awful. They kept asking if I wanted to continue with the pregnancy, like they were sure it wasn’t going to be a positive outcome. That was one of the hardest points for me.

Josh and I made the decision that I’d go on bed rest, only leaving the house for a scan every 2 weeks, where they kept asking that same horrible question.

My baby arrives early

At 27 weeks I had, what felt like, period pains in the night and the next morning had a bit of a show so went to hospital. The external scan looked fine but then the midwife did an internal check and said she didn’t want to alarm me but she could see baby’s foot in my cervix. 

Things were about to go from 0 to 100 really quickly.

People flooded into the room and I was prodded and poked in all directions. They said anything other than emergency c-section would be unsafe so I signed the consent form, without really understanding what was going on. 

I was in complete shock so, when the midwife said we’d had a boy, I couldn’t take it in. They worked on Isaac then took him to the neonatal intensive care unit (NICU) - we had photos but it was a couple of hours before I could actually go and see him. 

Even though I work in a children’s hospice, nothing prepares you for seeing your tiny baby covered in tubes. That’s when it hit me that he was really poorly.

We only had 10 minutes with him before they needed to transfer him to a Level 3 NICU in Plymouth. I was meant to follow in an ambulance so sent Josh home to get what we needed, but 30 minutes later they said they didn’t have enough ambulances.

I was left with just a photo of my baby and no idea what was happening. I just cried and cried, I felt so alone.

The transport midwife had kindly taken my number and texted when they were halfway there to say he was fine, then to say they’d arrived. Josh saw him first thing next morning but paperwork meant I didn’t get discharged until 1pm which made me really angry.

When I got there, the consultant explained that they’d do everything they could but Isaac was very poorly, we had to take each day as it came.
 

Saying goodbye

At first he progressed well - then he began deteriorating a little more each day. On the last day, I just knew he wasn’t okay. Then, at midnight, they knocked at our room door to say we needed to get to NICU. They were giving Isaac CPR when we arrived and it was horrendous to see our tiny baby being worked on by so many people.

They resuscitated him but said it wasn’t in his best interests to do it again and we agreed. He’d been through enough. So they stopped intervention, he came off the ventilator and I could hold him for the first time. I was still holding him at 2am when he died. He was just 8 days old. Josh had been scared to hold him but I encouraged him and, he’s since said, he’s so glad that I did.

He came off the ventilator and I could hold him for the first time, I was still holding him at 2am when he died.”

Isaac was in an open incubator with a cooling mat and we spent the day with him. They took handprints and footprints for us but mostly just left us, which wasn’t great. Then, when we went to see him again the next morning, his blanket was soaked from condensation. They’d said he’d be checked on through the night which clearly had not happened. 

I was so angry and upset as it felt like Isaac was already being forgotten. I know what good bereavement care is and we didn’t get it.

We’d decided to go home that day and asked for Isaac to be taken from the room beforehand and that was heart-breaking. Dad picked us up and just held me as I wept, I cried all the way home.

Two days later I got a call from my community midwife asking how me and baby were getting on, I remember apologising as I explained to her Isaac had died. That just shouldn’t happen.

Coping with bereavement

Physically, I healed more quickly than I did emotionally. I did go back on antidepressants but didn’t have any psychological support for a long time, just relied on my friends at work. I tried counselling about a year after Isaac died but didn’t feel the benefit.

When Josh proposed it felt time to try again and it took a little while. We had an early scan at around 6 weeks but, a few days later, I miscarried. It was the weekend so I had to wait 2 days for a scan to confirm it which was hard.

In September we got married and, soon after, we both went to the GP for tests. We’re still waiting for next steps, hopefully a referral to a fertility clinic.

Tommy’s research is so important, it changes lives. It’s so difficult to go through such unimaginable trauma, only to be told ‘it’s one of those things’. 

Maybe if we’d had steroids earlier, maybe if my GP had done more tests rather than giving me antibiotics, more could have been done for us. 

I found Tommy’s not long after Isaac died and reading stories did make me feel less alone but I couldn’t find much information anywhere on PPROM (preterm pre-labour rupture of membranes) - which is why I’m sharing my story. I only hope it makes others feel less alone.