The Acre Foundation

Annabel’s story

Posted on 05 July 2014 by Beth

Annabel’s story

Annabel was born at lunchtime on a rainy autumn’s day in 2011. Eagerly anticipated, her arrival into the world was relatively smooth and, as with any new parent, we were over joyed and overwhelmed to hold our beautiful daughter, just minutes old, in our arms. A mother’s immediate instinct is to feed and in this way protect and nurture her new-born, and it was in trying to do this most natural thing that we began to realise something was wrong.

Annabel was born unable to swallow. In the hours following her birth she was moved to the hospital’s Special Care Baby Unit (SCBU) and an x-ray confirmed a condition called tracheo-oesophageal fistula with oesophageal atresia (TOF/OA), a rare and relatively complex condition where part of the oesophagus is joined to the trachea (TOF), and a short section at the top of the oesophagus has not formed properly so is not connected to the stomach (OA).

We had not heard of this condition previously, and understood very little of the medical jargon around us, but could see there had been a sizeable shift in the doctors’ concern for Annabel, and we knew enough to realise that if nothing could reach her stomach then she simply couldn’t survive.

Within 24 hours of her birth, Annabel had been transported with a nurse from SCBU in an Acute Neonatal Transport (ANT) ambulance to Great Ormond Street Hospital. These ambulances are specifically designed for new-born babies requiring urgent care, and are equipped with all the state of the art technology and medical expertise found on an intensive care unit, which made parting with her at this early stage of parenthood infinitely more reassuring.
Annabel’s TOF repair surgery at GOSH was carried out by Professor Pierro, a world renowned paediatric surgeon, and his medical team. The surgery is complex, in the UK only carried out in a small number of hospitals, and is still under research and trial; thirty years ago the expertise to repair TOF/OA didn’t exist.

We were fortunate, and are forever indebted to Professor Pierro and his team, that the surgery went well. At just under 48 hours old she was ‘repaired’, on a ventilator, and comfortable in GOSH’s neo natal intensive care unit (NICU).

The NICU is a very strange and surreal place; heart-breaking but somehow happy and hopeful. Annabel had two NICU nurses by her hospital cot constantly; every temperature taken, every breath monitored, every nasal-gastric (NG) tube feed given, every teddy bear-printed dressing cleaned and redressed, and every nappy changed with such care and tenderness. We stayed in the NICU for 8 days and got to know the wonderful team, never failing to be impressed by and grateful for their medical expertise and kindness. Where they could they let us help with Annabel’s care, they allowed us place a cuddly bunny next to her cheek, they answered our many questions, and they gave us support and reminded us that it was also a time to be happy and fall in love with our baby.

Annabel was brought out of sedation on day 7 and the following morning her ventilator was reduced to allow her to start breathing on her own. She gained strength surprisingly quickly and we were transferred to Squirrel Ward where the care is of the same extraordinary standard, but less intensive. Annabel and I had our own room, and the ward nurses encouraged us to takeover the NG feeding and we were able to lift Annabel out of her cot and hold her. The surgical team visited daily and assessed her progress and it seemed that she reached each little milestone of recovery faster than they had anticipated, and slowly tubes and monitors were removed one by one. Just 17 days after her surgery Annabel was able to feed orally, her breathing was stable and we were able to bring our daughter home.

At that time we still knew very little about TOF/OA; our surgical team and the nurses had focused on Annabel as an individual case rather than the condition itself, and this was the information we needed as her parents. We now know how lucky we have been, Annabel does not have many of the commonly associated serious cardio or vertebral conditions that can affect those with TOF/OA. She does have difficulty swallowing food and she does suffer from respiratory illnesses, both of these issues to be expected with TOF/OA. We regularly see the surgical team at GOSH who monitor her general progress and refer her to other specialists within the hospital to help us to develop coping mechanisms and manage her medication to deal with these issues.

Two and a half years in and we know Annabel still has a long way to go on her journey with GOSH, but we also know that she wouldn’t be here if it wasn’t for the expertise that exists in this frankly amazing hospital. We know that we, like so many other parents, have and will continue to benefit in the biggest way possible, from the learning and the research and the medical advances that these individuals, and all who support them and the Great Ormond Street Hospital Children’s Charity, have made to the lives of our children.