I had a difficult pregnancy with my daughter Emmeline. She was a twin, but sadly I lost Emmeline’s sister Beatrice to Twin-to-Twin Transfusion Syndrome (TTTS) 20 weeks into my pregnancy. It nearly cost Emmeline her life as well, as she was extremely poorly. I’d had surgery to split the placenta, with Emmeline carrying on while Beatrice sadly died, which was a terribly painful experience for our family. My waters broke at 27 weeks, with Emmeline arriving by emergency caesarean section at 28 weeks, weighing 2lbs (905 grams).
Emmeline spent a total of 75 days in neonatal intensive care units (NICU), being born without a heartbeat at Calderdale Royal Hospital in Halifax before being resuscitated and transferred to Bradford for specialist care. She returned to Calderdale five days later, but due to her size and under-developed lungs, she was very poorly in those first weeks, where we thought we might lose her. She was so small and fragile but proved to be an absolute warrior. She battled through and, to our great relief, was allowed to come home on 15 July, the birthday of her namesake Emmeline Pankhurst, the suffragette who helped women win the right to vote.
Although Emmeline was home, the trauma of everything that had happened before combined with her weakened immune system – premature babies often have complications that hang around long after they leave hospital – left me extremely anxious for her wellbeing. I was accessing one-to-one support for my anxiety when, three months after leaving NICU, my worst fears came true. Emmeline contracted (HMPV) and fell seriously ill with bronchiolitis, resulting her being blue-lighted to Calderdale’s A&E department. The very thing I was anxious about and had been receiving therapy for had happened, and it was just devastating. It was such a shocking, traumatic time, especially on top of the suffering we had already experienced.
At hospital she went downhill rapidly. Her bodily systems were shutting down, and eventually she was intubated. Our stress levels further increased when we were told that a wave of Bronchiolitis admissions had resulted in a shortage of Paediatric Intensive Care Unit (PICU) beds in the area, meaning that Emmeline needed to be transferred to Newcastle’s Royal Victoria Infirmary (RVI), some 120 miles away from home, for treatment. Embrace, the Children’s Ambulance Service in Yorkshire, took Emmeline and myself up to Newcastle through the night, with my husband Chris, who was looking after our three-year-old son Teddy, following the ambulance.
I was such a long way from home, feeling extremely vulnerable and worried about everything. I was desperately in need of a base, a place that I could retreat to while still being as close to Emmeline as possible. It was all a bit of a blur, but I clearly remember meeting someone from The Sick Children’s Trust, wearing one of those wonderful pink t-shirts, not long after we arrived. They gave me a place to stay at their Crawford House ‘Home from Home’, which supports families with a child being treated at the RVI, and I cannot begin to tell you how thankful I was for that.
It proved to be the most incredible place of sanctuary at what was a very frightening time for me. To have that private space away from the stresses, strains and noises of the Paediatric Intensive Care Unit was just so important for my wellbeing. I wanted to be with Emmeline all the time, but Crawford House gave me that place to regroup and recharge, which was vital for my own mental health.
While I only stayed at Crawford House for three nights, it was not my last stay with The Sick Children’s Trust. To move us closer to home, Emmeline was transferred to Sheffield Children’s Hospital – still more than hour away from our home in Huddersfield – where her care would continue. Again, The Sick Children’s Trust played a vital role in keeping us together, with the angels in pink shirts coming to my rescue and providing a room at their Magnolia House ‘Home from Home’. It was another wonderful place; this time being connected to the hospital itself which kept me even closer to my baby girl.
My homely room became a place of sanctuary for me, a private place where I could not only sleep and shower but also have a cry or express milk. While I never wanted to be away from her side, I knew how important it was to look after myself by resting, ensuring I could be at my best while taking care of Emmeline. I was at Magnolia House for six nights in total, at which point Emmeline was well enough to be moved off PICU and onto a regular children’s ward. She was soon transferred back to Calderdale before eventually being allowed home on the most fitting of dates: 17 November 2021, World Prematurity Day. After such a long, emotional journey, it was wonderful to finally get her home.
The ‘Homes from Home’ provided by The Sick Children’s Trust are exactly what parents need, allowing us to focus completely on our child while they are in hospital. You can focus all your energies on being strong for your child, and it was so fantastic to have that support. I don’t know what we would have done without them. In Newcastle I would have needed a hotel which would have come at great cost and almost certainly would have been further away than Crawford House.
It’s not just the proximity though, it’s the fact that everything is just there, sorted for you. I didn’t have to worry about it. It was so valuable. In Sheffield, even though I was closer to home, I don’t think I could have brought myself to leave her. Thanks to The Sick Children’s Trust, I didn’t have to.
One year on from all that trauma, we will be doing all of things we couldn’t do last year while Emmeline was in hospital. We really enjoyed our first Halloween and bonfire nights as a family, and we’ll be making a big fuss on World Prematurity Day 2022 to mark exactly one year since she left hospital. We just want to celebrate Emmeline as much as possible.
Helen Hudson, Emmeline’s mum
