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Thanks to The Sick Children’s Trust’s ‘Homes from Home’; we could be with the boys at any time, which meant the world to us.

News   •   Jan 18, 2017 17:20 GMT

When James and Alex were treated in Cambridge, The Sick Children's Trust supported them with free 'Home from Home' accomodation

My twins, James and Alex, were born at 29 weeks after I went into spontaneous labour. My husband, Pete, and I weren’t completely surprised as from the moment we found out we were pregnant with twins, it seemed like every week I was having scans and it felt like every week we were overcoming hurdles.

It was one thing after another… from being told that they could not see one of our babies’ stomachs, to being told they may have a life-threatening condition. I was in and out of hospital throughout the pregnancy, but when I was just 25 weeks pregnant things took a turn for the worse at my local hospital – the Lister – when the medical team thought I was about to go into premature labour. I was transferred to the Homerton University Hospital which specialises in taking care of babies born before 28 weeks, but thankfully the boys managed to hold on a little bit longer. Even so, the team thought it best to keep me in for three weeks for monitoring which was horrible as I was so far away from Pete and my beautiful daughter Hollie, the people I loved the most in the world.

When I was finally allowed home, I was given strict instructions to rest. However after a week I had a bleed and was admitted back to Lister Hospital, where after a few slow days of labour, my boys were delivered by caesarean.

Both James and Alex were seriously ill and the doctors did all they could to try and stabilise them. But the following day, James was really struggling and producing a green bile. I remember the doctor coming up to my bedside the following afternoon looking very tearful. She said they had to transfer him to another hospital as they couldn’t help him anymore. She wanted me to go to see him immediately.

I was distraught. Pete had gone to get Hollie who was very excited about seeing her baby brothers…so I waited until he got back to the hospital to tell him what was about to happen.

We waited for the Acute Neonatal Transfer Service (ANTS) to arrive to transfer James, but we had no idea where he was going to be transferred to. Everyone was phoning everywhere to try and see where a bed was available. I was petrified – he was so ill. They thought he might have the deadly bowel condition NEC or malrotation of the bowel which is very serious… and while we tried to take all of this in, we had to cope with the fear that he may be transferred miles away from us.

When the ANTS team arrived we found out that James was going to be taken to a specialist hospital in Cambridge - The Rosie. Because I had just had a caesarean, I couldn’t travel with him and at that moment our family was separated. Alex and I stayed at Lister Hospital while James and Pete went to The Rosie Hospital.

We had to adjust to a very new and complicated family life from then for the foreseeable future. At the time it was like a nightmare or a horrendous dream that I couldn’t wake up from. I was in overdrive, feeling like I had to be strong for everyone.

Having our children in three different places made it very hard, and we wanted to be with them all but had to divide our time which was extremely difficult. What made it easier though was The Sick Children’s Trust. When James was taken to The Rosie Hospital, Pete was given a set of keys to free accommodation which was just below the neonatal intensive care unit (NICU) where James was being treated. This place, Chestnut House, became home for the following ten days.

Alex stayed in Lister Hospital on the neonatal care unit during this time which meant I couldn’t stay with him, so to make this horrendous situation a little more bearable I went to Chestnut House to be with Pete and Hollie, and to be near James. I couldn’t bear the thought of being separated again from my loved ones like I had at Homerton – so Chestnut House was a huge relief. Being away from Alex was very difficult – but we would travel to see him every day. It was hard, but it somehow worked. We’d cook at Chestnut House, we could wash our clothes and Hollie used the wonderful toys and lounge available for us to use. She actually called it our holiday home – and it made it easier for all of us to cope with the awful situation.

Nearly two weeks later, James became stable enough to re-join his brother at Lister Hospital and finally seven weeks after the boys were born, they were allowed home.

We thought that was the end of a terrible beginning, but it wasn't.

Two weeks later Alex caught a cold but one morning I found him lifeless and freezing so I called 999. An ambulance arrived and took the three of us to Lister Hospital and despite their best efforts, they couldn’t stabilise Alex so he was transferred to Addenbrooke’s Hospital in Cambridge.

It was like a reoccurring nightmare. Pete once again went to Cambridge but this time with Alex who was put into an induced coma, while I stayed at Lister Hospital, with James who was being observed.

At Addenbrooke’s, Pete discovered that there was another ‘Home from Home’ run by The Sick Children’s Trust for families with seriously ill children on the paediatric intensive care unit (PICU). Again, The Sick Children’s Trust stepped in to help keep our family together and gave us a room at Acorn House.

For the next week I stayed at Lister Hospital with James, but tried to see Alex as much as possible. I felt torn between my children. I wanted to be there for both my babies, but knew at this point Alex was really poorly, and I wanted to see him and be there for him. However in that week James began to get ill very quickly and one night the doctors were unable stabilise him. It was the scariest night of our lives... I honestly thought he was going to die.

Hours later, James was transferred to Addenbrooke’s too. I felt a strange relief, because although I knew James was really poorly, my babies would be together on PICU at Addenbrooke’s – a place we knew would save our boys.

For three weeks while the boys underwent everything from physio to blood transfusions, we lived at The Sick Children’s Trust’s Acorn House. We could be with the boys at any time, which meant the world to us.

It’s scary to think what could have been had Acorn House not been there for us. Having somewhere to stay near James and Alex was more than we could’ve ever wished for – leaving them on the unit was hard enough, but knowing we were just minutes away at night helped.

We feel we owe the charity so much for supporting us in two of its ten ‘Homes from Homes’, so last year I decided to get involved with The Sick Children’s Trust’s Pyjama Party and encourage my jazzercise attendees to come dressed in their pyjamas, this raised £1,878.

The ‘Homes from Home’ are lifesavers for so many parents like us whose children are treated at a hospital far away from home, who are critically ill, undergoing lifesaving surgery or battling conditions like cancer. We hope that the money we’ve raised will help more families that find themselves in similar situations to us, and those we met at Chestnut House and Acorn House.

James and Alex are now doing really well, they have just celebrated their first Christmas and their birthday is not far away. And we can’t wait to see how else they’ll amaze us.

Kerrie and Pete Charles,
Hollie, James and Alex’s parents

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