Camilla, Noah’s mother has written this wonderful piece for us, sharing her son story with us.
We would like to thank Camilla and Rob for allowing us to publish Noah’s story.
Noah is now 6 months old and has fought many challenges, but he has shown his character through multiple infections, clinical investigations, and major surgery.
Friday 7 May 2021 was like any ordinary day…walking the dog, a declutter of the house. That was until 5pm when I started to feel unwell. For peace of mind, due to being 24.2 weeks pregnant, Rob and I jumped in the car (for no doubt a wasted journey) to Whitehaven Hospital.
Fast forward three hours and we had been informed that I would deliver our baby within two hours. I was going into labour (which at the time would have been 16 weeks early). My intuition told me I needed to be at the Royal Victoria Infirmary (RVI) in Newcastle and so we pushed for a transfer. The consultants’ concerns grew and due to the imminence of delivery they did not want to transfer me. A few hours later after pushing for a transfer, my wish was granted, and we were then transferred to Newcastle’s RVI in an ambulance with the lights and sirens on.
Two consultants and a midwife accompanied me in the back of an ambulance to the RVI, they were excellent and kept the situation calm and focused. Rob was furiously following behind.
Rob and I were now on the RVI delivery Ward 32 and waiting. All the staff expected the baby to come that night. In the early hours of Sunday 8 May, we went for a scan to determine how things were with our baby. Thankfully, all was well. On the Sunday afternoon, I was sent for a cervical stitch operation to prevent our baby from arriving so early, but unfortunately, the operation was not a success. The news of me being 8cm dilated was given, and that the procedure had broken my waters. Delivery was now ever more imminent. Our hearts sank and our worries spiralled.
For the next few days, I lay in bed as still as possible with Rob sleeping next to me. The balance was now maintaining the pregnancy without risk of infection and each hour and day was a bonus for us. After two false start labours and five days passing slowly, I began to feel ill. The doctors examined me and we were told our baby’s heartbeat had dipped – the time had come!
Following a sleepless and anxious night, our consultant examined me and came to inform us that delivery would be within the next hour, 15 weeks early. Several complications and dreaded options were discussed due to the early gestation and the prematurity of our baby. Rob and I did not give these a second thought and we told them to do what they needed to do for our child’s survival. It was a quick dash to the surgical room for an emergency caesarean. Rob put on his scrubs and was supportive and by my side the whole time.
Within an hour, at 11.06 am on Friday 14 May, Noah Theodore Miller, our precious son, was born weighing 1lb 4oz. We were blessed and forever thankful he was here safely.
I remember asking if he was alive. He was ventilated after a minute and rushed for care. Our lives had instantly changed.
Rob and the doctors wheeled me around to see Noah shortly afterwards. It was surreal. Lots of piercing machines, people, panic. We entered a very alien environment – the Special Care Baby Unit (SCBU) and Neonatal Intensive Care Unit (NICU). An overwhelming setting. An experience we do not wish anybody to have to endure. The moments after childbirth are the most precious, Rob and I were wheeled to see Noah but did not get to hold him until 24 hours afterwards due to his prematurity. Our focus was locked. He was here and alive.
Ward 35 was now our new life… hopefully just for a while. Covid restrictions were in force and Rob and I could not visit Noah at the same time for the first two months which made the experience even more gruelling. However, we found ourselves still there almost 14 weeks later. Noah is now 6 months old and has fought a few challenges, but he has shown his character through illness, surgical investigations, and surgery.
How did Tiny Lives impact your time on the unit?
We received support from two charities on our journey, Tiny Lives Trust and The Sick Children’s Trust.
- Refreshments and a parent’s room are also funded on the ward allowing an outlet close to your baby. This is essential when you are spending 18+ hours a day there for several months.
- Small miniboo bonding aids are distributed, in the form of small cloth comforters, which allow Mum and baby to feel close even when apart, by smelling one another. This helps to reduce the separation anxiety.
- We were given a children’s book to encourage parents to read to their baby as this is essential for all neurodevelopment functions and a NICU journal to document our journey.
- Tiny lives also fund materials that enabled the nurses to take a print of Noah’s foot and handprints in his first week of life which is something we will cherish forever.
These family-integrated initiatives really make a difference.
Tiny Lives offer a safety net for parents, like us, who have entered a world completely out of their control. Having a baby that is born prematurely or sick is a truly world-shaking experience that requires a lot of perseverance, resilience, and strength. It Is a mentally exhausting journey, but Tiny Lives has been there supporting us through it.
Most days were spent expressing milk, skin to skin, tube feeding and changing nappies throughout the tiny incubator doors. Each morning we attended a ward round with the neonatal consultants and devised a plan of care in a triangular approach. Throughout medical treatment ‘comfort holding’ was the alternative in the incubator. Gently cradling his head and legs.
The Sick Children’s Trust provided us with a place to stay while Noah was in NICU. We found out about its Home from Home facility, Crawford House, when we were on the ward and spent over ten weeks there. We didn’t spend much time in Crawford house, but it was somewhere we could go after we had spent the day with Noah and get some sleep knowing that we were a close distance to the ward. There was a phone in our bedroom which linked directly to Noah’s ward. The phone was been used a couple of times when Noah’s condition changed during the night. Although it is horrifically unnerving to receive the calls, it’s there and is a fantastic resource. Our son being only three minutes away at any time made situations like these so much more manageable.
The staff at Crawford house have strong links with the NICI unit and ensure they liaise with the ward to ensure the families are supported. The house has a cleaner and is immaculate. As we approached the end of our journey, and as Noah reached discharge after he recovered from three sepsis infections and ileum stenosis surgery, we consider ourselves very lucky, some families are not so fortunate and are not able to take their baby home and our heartfelt condolences go out to those families.
We are so grateful to both charities. These charities provided us with the best location to be with Noah 24/7, whilst having a base within the hospital grounds. We feel strongly about giving back and have therefore have been fundraising for the charities, asking our colleagues, friends, and family to support us as much as they can.