My newborn son spent his first Christmas recovering from major surgery, Crawford House kept us together
We had waited three long years to have a baby, so when we found out we were expecting and that the baby was due at Christmas, my husband, Joe, and I felt so lucky and excited.
My waters broke on the evening before our 6th wedding anniversary, and all was progressing well with my labour. However, 48 hours later our baby became stuck and distressed, and I was sent for an emergency c-section. Our beautiful baby boy, Alfie, was born at 9:30pm on 4 December, his due date, and we couldn’t believe how perfect he was.
The midwife looking after us was aware that I wanted to breast feed. Soon after Alfie was born, I attempted to feed him, he struggled to latch on and when he did, he began to cough and splutter. Alfie was passed to Joe for a cuddle, and it was then that we first noticed that something wasn’t quite right. Alfie seemed to be struggling with his breathing, but after a quick check we were reassured that Alfie was fine. However, upon arrival back in our hospital room Alfie stopped breathing. Thankfully the midwife was present, and Alfie was resuscitated and quickly whisked away to the Special Baby Care Unit. Joe and I were encouraged to get some rest, and after two days of labour we both felt exhausted, so we reluctantly tried to sleep.
We were woken up at 2am that morning by two paediatricians and instantly knew something was wrong. They began to explain that the medical team unsuccessfully tried to place a feeding tube down Alfie’s throat. The doctors couldn’t tell what was preventing the tube from reaching Alfie’s stomach, just that it was coiling part of the way down. They used a lot of medical terminology that we didn’t understand, all we knew was that our son needed surgery immediately to survive. The next few hours were filled with anxiety, patiently waiting for a bed to became available at one of the surgical hospitals. We were advised that Alfie would most likely be transferred to either Glasgow or Newcastle, both of which are very far away from our home in Cumbria. With this in mind, Joe raced home to pack some belongings, including a sleeping bag just in case he needed to sleep in his car. With no family in either location, there wasn’t anywhere we could stay.
The next morning a bed became available at the Royal Victoria Infirmary (RVI) in Newcastle, a two hours’ drive away from our home. The incredible NECTAR team, a specialist ambulance crew, arrived to take Alfie to Newcastle. They provided me with my first reassurance that he had a chance at survival. They believed Alfie had oesophageal atresia, a rare birth defect where the oesophagus is not attached to the stomach. Although rare, the RVI perform specialist operations on around 15 babies with similar conditions each year, giving me my first glimmer of hope. The team also provided me and Alfie with a bonding comforter; a small teddy that meant a part of me, my smell, could be with him even when we are apart. This small act of kindness meant the world to me. Waving goodbye to my baby boy as the team took him for the journey was one of the hardest moments of my life. I didn’t know if I would see him again.
I followed closely behind Alfie in another ambulance, with Joe travelling to Newcastle by car. En route I was contacted by the surgeon who would carry out Alfie’s procedure, asking for my consent for the surgery to go ahead. We weren’t sure if we would make it in time to see him before he went to theatre, with Alfie needing the operation immediately on arrival to give him the best chance of survival. Joe and I arrived at the RVI just in time, walking Alfie to theatre and giving him a kiss goodbye as he was taken in.
We were blown away by the amazing care and support Alfie, Joe and I received at the RVI. The team were able to confirm Alfie’s diagnosis of oesophageal atresia and tracheo-oesophageal fistula, which results in a connection between the lower part of the oesophagus and the windpipe. This causes air to pass from the windpipe to the oesophagus and stomach, and stomach acid to pass into the lungs, meaning Alfie couldn’t get food to his stomach. To help explain Alfie’s defects the surgeon even drew a picture for Joe and I to help us better understand why our 24 hour old son was about to undergo a three hour surgery. Those hours felt like days, but thankfully the surgery was a success. However, Alfie had suffered aspiration pneumonia and a collapsed lung, which they believed may have been a result of the attempted feed after birth. Because of this Alfie was placed on a ventilator to support his breathing, which he remained on for nearly four weeks.
For our first couple of nights, the midwifery team at the RVI allowed Joe to stay with me on the ward. However, we knew we wouldn’t be able to stay at the hospital after I was discharged. It was then that the amazing nurses on the Neonatal Intensive Care Unit (NICU) told us about Crawford House – a ‘Home from Home’ ran by The Sick Children’s Trust which supports families with a place to stay completely free of charge – and arranged a room for us there. The next day, Andrew and Connor from The Sick Childrens Trust collected Joe from the hospital and showed him around Crawford House. We felt so incredibly lucky to have one of the twenty-four rooms.
Crawford House really felt like a home from home. There was a large Christmas tree in the reception, a communal kitchen, warm bedroom and bathroom. We had towels and clean bed linen and the welcome we received was so comforting, which was just what we needed when we were so far away from home. I found it so incredibly hard to leave Alfie on the ward each night, so to come back to such a warm, homely place like Crawford House, just four minutes from Alfie’s bedside meant the world to us. It made a very difficult time that little bit easier. Joe was even able to run over in the early hours of the morning to deliver my milk to Alfie, which was an important part of his recovery.
We spent our first Christmas as parents at Crawford House. While this was extremely difficult, the wonderful staff there did everything they could to make this magical time of year special and enjoyable for us. They arranged for a carol service and raffle where my mum won some books for Alfie, and on Christmas Eve we came back to find a box of presents on our bed, which made me cry but also meant the world to me. Being a massive fan of Christmas and our favourite time of year, we wanted to start our own family traditions. One of which was to read ‘The Night before Christmas’ on Christmas Eve to Alfie, something made possible by the close proximity of Crawford House to the ward. We stayed with Alfie until the early hours of the morning that night, hung a stocking by his incubator and read our story to him. Though it wasn’t the first Christmas we had planned, we still got to spend precious time with our baby.
Another wonderful part of Crawford House is the families and friends you meet. It’s the club no one wants to be a part of, but when you are it is the lifeline you need to survive. We have made friends for life at Crawford House and the support we received from the other amazing families who were also staying at the ‘Home from Home’ was incredible.
We are so incredibly grateful to the Sick Childrens Trust for providing a place for us to stay at Crawford House for the near seven weeks Alfie was in hospital. I genuinely don’t know what we would have done without their support. I was not prepared to leave Newcastle without Alfie and we would have struggled to afford to stay in accommodation in the city. The charity provided comfort, security and kindness at an extremely difficult time in our lives, and we are eternal grateful to them.
Following his recovery Alfie is now thriving. He is a marvel to the surgical team and absolutely loves his food, much to everyone’s delight. We have big plans for Christmas at home this year, wanting to make up for being unable to spend it with our extended family last year. Although we will be making the most of this special time, we will also be thinking about the families spending Christmas in hospital and at Crawford House this year. We know how heartbreaking it is to have a child in hospital at any time, but over the festive period is particularly difficult. Our Christmas wish will be that they all get home soon. We’re urging everyone to support The Sick Children’s Trust and their Christmas appeal so that every family can be together over the festive period. I can tell you personally that anything you can give will make a world of difference to those families.
Every year we help families by giving them somewhere to stay near their seriously ill child’s hospital bedside. Sign up to receive our email newsletters to stay up to date with how your support is helping to keep families together.