Bobby was born six weeks premature after a difficult pregnancy. He came into the world very quickly, labour being just over an hour.
When he was born he had a compromised airway and a tube could not be passed down his oesophagus to clear his secretions and assist his breathing. Within an hour from birth the doctors at the Jessop Wing had diagnosed him with tracheoesphageal fistula and esophegeal atresia, which means his food pipe (oesophagus) was connected to his windpipe (trachea) and there was a long gap between the end of his foodpipe and stomach.
Bobby remained in hospital from birth for just over three months. His first surgery was to disconnect the foodpipe from the windpipe - his many months in hospital were to give chance for his oesophagus to grow so they could connect it to his stomach, which was then done in his second surgery. Bobby could not feed initially and was then fed via a tube directly to his stomach.
He was then diagnosed with a further condition called trachemalacia, after several episodes where he stopped breathing. This means his windpipe is ‘floppy’ so his airway collapses.
Bobby was back in surgery two weeks ago for an open chest operation called an aortapexi to remove a gland from his chest to make room for them to stitch his aorta artery to his breastbone, helping to open up his airway and improve his quality of life. Afterwards he was in a coma in intensive care and his recovery will take up to six months.
Aged only four-and-a-half months, Bobby has already had seven surgical procedures and hasn’t had more than two weeks at home with his family due to continued hospital admissions. Bobby will require more in the future to ‘stretch’ his oesophagus as the operations which are needed cause scar tissue which creates a narrowing and this means he cannot properly feed or breathe.
One of the hardest things is trying to educate friends and family and get them to really understand the dynamics and implications of the condition
They correct the narrowing by putting a balloon down this throat and inflating it to create the ‘stretch’.
Bobby’s condition is lifelong and will likely mean issues with feeding and breathing. He will remain under the watchful eye of the consultants at Sheffield Children’s Hospital.
‘BobFest’ in Hillsborough was created by myself and my husband Tony, a firefighter, after endless hours next to Bobby’s bedside in hospital; we were both keen to make something positive out of something so harrowing and as a method of distraction during difficult times.
The £4,500 raised from the first event will go to the children’s hospital, specifically the neonatal surgical unit and the TOF charity.
Bobby spent the first part of his life in the unit and the doctors, nurses and surgeons there literally saved his life. As parents, we too spent months on the NSU and they were as important to us as they were to Bobby with their kindness and support.
One thing we really struggled with (much like all the other long stay babies) was stimulation. Hospital is a boring place for anyone let alone a baby who is in the crucial first stages of development and learning. So we specifically want to raise money for sensory equipment for the NSU babies to overcome this. It also gives the parents something positive to do with their babies when they feel most helpless.
We are also supporting the charity - a cause specific to Bobby’s rare condition which affects only one in 4,000 babies. The TOF charity offers non-medical advice and support to families as well as the medical profession. They provide information leaflets, books and online support forums which are an invaluable tool for educating new and frightened parents about the condition their baby has been born with.
They help educate teachers, carers and healthcare professionals raising an awareness of the problems they may face when caring for children with these conditions as they may have swallowing and feeding issues. In time, Bobby will go to nursery and school and his teachers will need first-hand knowledge of him and his condition. Right now, anyone who babysits or spends time with Bobby away from us will need to have knowledge and awareness of his condition.
The TOF charity arranges conferences for the parents and carers to attend which are supported by specialist medical professionals who give advice and inform us of the latest research. We will be attending one in Luton in October. For babies like Bobby they also arrange parties and family fun days. This gives children and parents an opportunity to meet other families who understand what they are going through. It gives time away from the strains of hospital visits, which can be numerous, as many children need surgical intervention for a large part of their early life. As Bobby grows up, he will directly benefit from this.
Significantly, the charity raises awareness of the condition and the short and long-term health issues patients may face. This is so important us as one of the hardest things for us in this journey so far as parents of a TOF baby is trying to educate friends and family and get them to really understand the dynamics and implications of the condition - it’s hard enough for us to get our head around let alone everyone else. But it is so important that they understand.
We hope therefore that BobFest will become an annual event.