Chestnut House has brought my family and I closer than ever

As a mum to a lovely little girl, finding out I was expecting another child filled me up with joy. I was so excited to bring another life into this world. My partner Dean and I already had a beautiful girl called Lexi, so finding out I was going to have a boy made me feel both excited and a little nervous.

My pregnancy went well and there were no problems until one afternoon in August. That day I went to the park with Lexi and when we came home, I had a relaxed dinner with my Mum and headed to bed.

I was woken by a sudden pressure around my pelvic area. I’d never felt anything like this during my pregnancy with Lexi, and I was confused and worried as I was only 25 weeks pregnant. It was far too early for my waters to break. Dean was out with friends so I called my mum and together we rang the hospital for advice.

From there, things quickly escalated and I was admitted to a specialist neo-natal unit at The Rosie Hospital at Addenbrooke’s in Cambridge. When the doctor examined me, he told me I was already 5cm dilated. All I kept saying was “It can’t be happening it can’t be true.” Everything seemed to be happening too fast and I knew my baby wasn’t ready.

The doctors gave me steroids to help my baby develop and put me on a drip for 24 hours. Then they put me in a wheelchair and moved me so I would be closer to intensive care. That’s when it hit me that my little boy was coming, no matter what. That night for both Dean and I was very long indeed. I began to get more scared and concerned thinking whether my baby was going to be alright.

The next day my labour began and five hours later, I gave birth to my gorgeous little boy Frankie-Dean, named for his great-grandad. He weighed a tiny 2lbs 1oz, but he was so adorable and it was such a blessing to see his little face after all our worry.

As Frankie was so premature, we weren’t able to take him home straight away, but Dean and I were just glad that he came through the labour. But he needed a lot of specialist care as he began to have problems with his little body.

At first, Frankie was having problems breathing on his own so doctors put him on a ventilator. All I could think of was the worst: he was only a few weeks old and was having to go through so much. Then doctors discovered that he’d had a grade four brain bleed and might need a shunt to drain the fluid which was causing pressure. There was also the risk that the bleed had caused some long-term damage and would affect little Frankie’s development.

Frankie was then diagnosed with PDA, a heart problem which affects the circulation of blood between the heart and lungs. Then if that wasn’t enough for my little boy, his lungs kept collapsing which led to chronic lung disease. Due to his prematurity, some of Frankie’s organs hadn’t developed properly. One side effect was him developing the bowel disease necrotising enterocolitis which was very scary for both of us.

I knew Frankie would be in the hospital for a long time, and I desperately wanted to be by his side, as did Dean and Frankie’s big sister Lexi. Thankfully, a nurse on our ward introduced me to Alan Booth, House Manager at The Sick Children’s Trust’s Chestnut House which was just a lift ride away from Frankie’s bedside.

The more Alan began to explain about Chestnut House, the better I felt about the long stay Frankie faced in hospital. Being just minutes away from Frankie meant I could visit and check up on him any time of the day or night.

The house was just the right size for us to stay together as a family with Lexi. With a kitchen, dining room, living room, playroom and laundry, it felt like a proper home. I was able to maintain our usual routines which helped keep things as normal as possible for Lexi. In fact, I was so happy with the way Lexi settled into our new home as I was worried at first because I didn’t want her to feel left out with all the attention her baby brother was getting. With the dedicated playroom and TV room, I never saw her get bored or fed up - she had all her toys with her and Alan loved to say hello and chat with her, which helped a lot.

Alan was brilliant; I loved him to bits. He was so understanding and helpful all the time which made such a difference after a long day in the hospital. He was my ray of sunshine in the darkest days! There were also lots of other families staying at Chestnut and they were all really nice. We were all in the same situation with our babies and I can genuinely say I have made friends for life through meeting people there.

The whole experience has really brought my family closer together. So much has happened since Frankie was discharged from the hospital. He went home on oxygen, which he needed for nine months before being slowly weaned off. He also had daily physiotherapy and regular visits from the community nursing team.

Now, he’s doing really well, his doctors, my partner and I are really proud of him. Thankfully, he doesn’t have any ongoing issues with cerebral palsy, eye sight issues or deafness which were the risks from his brain bleed. He’s moving well and the wonderful thing is that he’s talking!

His big sister Lexi is now more confident than ever and she started primary school in September.

I just want to thank The Sick Children’s Trust and Chestnut House from all of us: having a ‘Home from Home’ while Frankie was fighting for his life in hospital really did keep us together as a family and make it easier for us to cope with everything that was going on.

Danielle, Mum to Frankie-Dean