In times of crisis you never forget those that step in to support

As a new decade begins, we chat to Eva’s mum to find out how she is getting on since our support in 2013

This can certainly be said of our amazing family and friends and The Sick Children’s Trust especially at this time of year. This time six years ago we had just welcomed our little daughter Eva into the world all 525g of her and so begins our story.

At almost twenty weeks into our pregnancy we were told the devastating news that our baby was not growing as she should as was diagnosed with a condition called Intra Uterine Growth Retardation which meant she was not growing at the standard rate. This was the moment that the story of our little girl became one of numbers.

Fast forward ten weeks and numerous scans later our beautiful daughter had reached the target minimum weight of 500g. This weight was so critical as the lifesaving equipment would be too big had she not reached this weight but even then, there were no guarantees that she would survive.

“We knew that the hours, let alone days and weeks ahead, would prove a challenge for Eva but we were there every step of the way.”

Three days before Christmas my own health deteriorated, and it became critical that I have a caesarean in order to give Eva the best chance of survival. Eva was delivered safely by the wonderful staff at University College London Hospital and weighed in at 525g, the size of a small bag of sugar. Owing to her miniature size and extreme ten week prematurity we were catapulted into the medical world of Neonatal Intensive Care Unit (NICU) where Eva had been moved to on delivery. It became apparent very quickly that Eva would require lifesaving surgery as doctors had discovered that her oesophagus was not connected properly to her stomach. In the early hours of the morning Eva was rushed by ambulance to The Royal London Hospital in Whitechapel, East London. I was not able to go with Eva at this stage owing to my own Intensive Care Unit recovery post caesarean. We were only just a family and suddenly we were torn apart.

Eva underwent her surgery to repair the gap in her oesophagus that morning and thankfully it was a great success and for once her small size was in her favour. On Christmas Eve, I was transferred to The Royal London Hospital and finally we could celebrate Eva’s successful operation and our first Christmas with our very special early gift. Having been thrown into this NICU world we knew that the hours, let alone days and weeks ahead, would prove a challenge for Eva but we were there every step of the way. When Eddi arrived at the hospital with Eva, as she was being settled into her new incubator, he was greeted by a nurse who had arranged for him to have a room at Stevenson House a ‘Home from Home’ run by The Sick Children’s Trust.

I say room but in fact it was so much more than just a room. It was our home and means of respite for 11 weeks. Stevenson House was a two minute walk from the hospital which meant that neither Eddi nor I needed to commute across the other side of London to be with Eva. We were both astounded by the amazing facilities that allowed us to distract and normalise our lives such as cooking a meal and washing our clothes and being able to talk with other families in the living room as a means of processing our own feelings.

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 and weeks of Eva’s life.

“We were both astounded by the amazing facilities that allowed us to distract and normalise our lives.”

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 there for another ten weeks, gaining both weight and strength and on 28 April, after 18 weeks in various hospitals, Eva finally made it home where she continued to grow bigger by the day. We were ecstatic to finally have her home where she belonged, away from the clinical hospital environment full of monitors and beeping alarms.

Over the last six years Eva has continued to amaze all captured by her spell. Her presence is commanding, and she has the ability to light up a room with her little personality. When we left hospital in April 2014 we knew that she would have challenges ahead of her as only time would tell what impact if any her prematurity and turbulent start to life would have.

As we look back on the first six years of her little life, she has faced each medical and developmental challenge (of which there has been many) as they have developed with the biggest smile on her face.

Our lives are still led by numbers, every two hours Eva requires intervention such as medication and milk feeds through her feeding tube and other personal care interventions that require care 24 hours a day. She has not found her voice and may never speak in the conventional sense; she has her own unique way of getting across her wants and needs using a combination of sign language and vocalisation. When we think back to her time in the NICU and fighting for her life in an incubator we could only dream of what she has achieved and continues to fight for. From a tiny baby, to bum shuffling her way around nursery, to finding her feet and taking her first independent steps when she was nearly three.

Eva loves to dance, sing and play dress up and took up ballet when she was five. Despite having a moderate hearing loss in her left ear, she has an amazing ability to recall songs and tunes that she is very fond of and is partial to a sing song on her karaoke microphone, much to the delight of our neighbours!

“When we think back to her time in the NICU and fighting for her life in an incubator we could only dream of what she has achieved and continues to fight for.”

In November 2017, Eva was diagnosed with Portal Hypertension caused by a blood clot in her portal vein which causes her to bleed internally and has resulted in numerous hospital stays. We have always been forever grateful for The Sick Children’s Trust giving us the ability to be a family that could be there to support each other every day through her hospital stay and it is further reaffirmed when Eva is admitted to hospital which is over an hours commute and only one parent can stay by her bedside.

The Sick Children’s Trust provides the most wonderful and precious facilities to families of sick children and we will never forget them. Over the years we have continued to show our thanks to The Sick Children’s Trust by completing a glow run at 18 months old, holding collections at family gatherings and attending the annual Christmas Carol Service in London.

Claire and Eddi O’Brien, Eva’s parents

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