Baby Eva goes home for the first time

Mum, Claire, describes baby Eva's story in her own words:

"At almost twenty weeks into my pregnancy we discovered that our baby girl, Eva, had a condition called Intra Uterine Growth Retardation which meant that she wasn’t growing at the standard rate and this was the moment the story of our little girl began to be one of numbers.

The doctors advised my husband, Eddie and I that Eva would have to get to a minimum weight of 500 grams in order to survive when she was born. If she was born below this weight, any equipment they had to operate would be too big. This resulted in what seemed like a never ending rollercoaster of check-ups and measurements to track Eva’s growth over the following weeks. During these appointments we discovered further issues and she was also diagnosed with a reverse flow of the umbilical cord, which resulted in increased pressure on her heart. Needless to say, my pregnancy was very distressing as Eddie and I, together with our families willed Eva to put on the weight required to survive.

As Christmas approached my own health began to deteriorate and I began to show signs of preeclampsia and high blood pressure. As a result the team at the University of London College Hospital decided that i would need a C-section to give Eva the best possible chance of survival and at this point Eva had only just made it through the boundary of where it would be safe to deliver, her latest measurement was a tiny 490 grams! We were terrified as the doctors couldn’t guarantee her survival but we knew that this was her best chance and the doctors would do everything they could.

Eva was born 10 weeks premature on the 22 December 2013 and due to her condition she weighed the same size as a baby of 23 weeks; just 525 grams, the same weight as a small bag of sugar. Doctors immediately took Eva into the Neonatal Intensive Care Unit (NICU) and it soon became apparent that she would need lifesaving surgery as doctors noticed her oesophagus wasn’t connected to her stomach. She was rushed in the early hours of the morning in an ambulance to the Royal London Hospital in East London with Eddie. Unfortunately I had to stay in hospital as I was still recovering from my C-section but my sister was able to meet them at the Royal London.

Eva’s operation was successful and her surgeon even said that for once being so tiny went in Eva’s favour as the distance to join her oesophagus with her stomach was minute. Eddie and I were so relieved and I was transferred just a day later on Christmas Eve to join them. We spent our first Christmas as a family together in hospital, which at any other time wouldn’t have been pleasant but we were thrilled to have Eva and the news that her operation had gone well.

Fortunately, Eddie avoided a long commute to and from our home in Pinner, North West London because of The Sick Children’s Trust. He was given a room in Stevenson House on arrival at the Royal London Hospital and we were both astounded to see the wonderful facilities that we could both use during Eva’s hospital stay. There was a kitchen, dining room, lounge and even laundry room.

I am sure that many families are keen to put these tough memories of a hospital stay behind them but Stevenson House enabled us to make some fond memories too. All the staff at the house were incredibly kind to us and as a family we were met with an overwhelming sense of compassion and understanding. Generosity of spirit and heart would be the best way to sum up our experience, especially over the incredibly challenging first few days of Eva’s life.

On Christmas morning my sisters who were also able to stay in the house, brought us some festive cheer with mince pies and a Christmas cracker. Eddie and I are both used to big family Christmases so being away from our family was really hard but having the house enabled us to have some family come and visit at least. It was wonderful that they could be with us at Christmas even if it was an unconventional one; spent eating a take away around my hospital bed! The transport links at Christmas aren’t the best especially in the bad weather so having the house meant my sisters who came to visit could prepare meals for Eddie and spend time with Eva.

I remained in hospital for 10 days due to complications after my C-Section and once discharged I was able to join Eddie in Stevenson House and it became our home from then on for eight weeks. To say that it is amazing is an understatement, to have a facility so close to the hospital which enabled us both to be by Eva’s side day and night is something that we will be eternally grateful for. Not only was it somewhere to lay our heads down and to get a few hours break from the NICU but it gave us the peace of mind that we would only ever be around the corner should  her condition deteriorate.

Following Christmas and Eva’s surgery, her condition continued to improve for the next few weeks and we were really hopeful until she took a massive turn for the worse and her lungs collapsed. She struggled to cope with this and also developed sepsis, a life-threatening bacterial infection. It was a scary time and meant that Eva had to undergo further treatment but she is a little fighter and fought as hard as she could for 10 days until her condition once again became stable.

Eva’s doctors warned us that it was likely that Eva could develop further complications as time went by but she had the strongest will to survive and fight, which encouraged us to remain both positive and optimistic throughout. There are many unpleasant memories of those first few weeks of Eva’s life, where we were so worried for her health but there were times of immense joy also which we will always remember.

Our journey has been up and down and each day has seemed to present a new challenge. Stevenson House has been wonderful and we honestly don’t know how we would have coped without it. To know that you can be so close to your child at such a critical time means absolutely everything. Speaking to other families who were going through similar situations was so helpful, it gave us comfort to know we weren’t the only ones and after a night’s rest and a home cooked meal, we felt a lot better.

On Valentine’s Day, we said goodbye to Stevenson House as Eva was transferred to Northwick Park Hospital, only 10 minutes from our home. She stayed here for another 10 weeks, gaining both weight and strength and on 28 April after 18 weeks in various hospitals Eva finally made it home where she continues to grow bigger by the day. We are ecstatic to finally have her home where she belongs, away from the clinical hospital environment full of monitors and beeping alarms.

The Sick Children’s Trust will always be a very special charity to us and we hope to keep in touch with all the house staff. They provide the most wonderful and precious facility to families of sick children and we will never forget them. Eva is the best Christmas present that we could ever have wished for. She has become the boss of our family and continues to have us wrapped around her tiny fingers!"