9th June 2019
When Chloe was just 26, she found herself leaving her job as a customer service advisor for Npower after her maternity leave to become a full-time-carer to her son Bobby.
Bobby, who was born at term, spent two weeks on the neonatal unit where he struggled with his oxygen levels and feeding. Bobby was diagnosed with Goldenhar Syndrome, a condition which can cause certain abnormalities of the face or head.
Chloe bravely shares her story with us as part of National Carer’s Week to help highlight families who leave neonates and become full-time-carers to their little ones.
“Bobby was a full-term baby but had a 2-week stint in neonates as Bobby was born with Goldenhar syndrome.
He also was dropping his saturations and required oxygen. I found my neonatal journey very hard. There was no counselling offered and no basic life support training, just a DVD given.
When I was in neonates it was always spoke about when we went home and how amazing it would be but for a lot of parents walking out of those double doors, it isn’t the end of the journey and basic life support training will be paramount to you as a parent.
Personally, I think I would have liked more honest. My paediatric journey couldn’t be any more amazing.
In total Bobby has spent 5 months in PICU at the RVI in Newcastle and they were truly amazing. 14 days after Bobby left neonates, he had his first respiratory arrest and the doctor we got transferred with via NECTAR (North East Children’s Transfer and Retrieval Team) that day,
Dr Andrew, made me feel my child was safe for the first time, as Bobby’s mum.7
He explained everything to me, where we would go, the machines Bobby was on – nothing was too much trouble. That service and support continued the 3 stays we had there.
The staff really helped my mental state by listening to us as parents giving us information. Bobby ended up having a tracheostomy, the training was amazing. We were offered counselling to help support us through this. Basic life support was given by a consultant, so we were prepared for future arrests. They also made me feel positive about Bobby’s syndrome telling me their experience with it.
When I first became a carer it I felt like I had lost my maternity my time with Bobby. My one to one had gone. Our time was spent up sitting watching over him in hospital cribs, and time is something you can’t get back and this is something I have struggled with the most.
Being a carer mum is hard in so many ways, because of the huge responsibility you have. It takes a nurse 3 years to sit a degree but when you’re a parent with a child with additional needs you need to learn fast.
I have to watch his saturations constantly, make sure his airway isn’t blocked. When you first go home it’s hard because it hits you – this your job now 24/7.
It’s hard not to obsess over sats and watching your child’s breathing and count resps. I will never use the phrase ‘just a cold’ in my house ever again, because a cold is so much more. It means a trip to hospital, put on oxygen and praying it won’t be serious.
Also sometimes, it’s hard to talk to friends who don’t share your experience. My sleepless nights are so much different to theirs and when your life changed so quickly, so fast, it’s hard for everyone to catch up.
Me and my partner are the only ones trained in Bobby’s care, so this affected our family dynamic greatly. If there is something Freddie wants to do like ice skating or the cinemas, then one of us always has to stay with Bobby.
Freddie is definitely, the one who has had to suffer the most. He never gets just mammy and daddy time. He had to spend the whole of 2018 pretty much in hospital. It’s a lot to take in having a new sibling but adding additional needs on top it can be quite daunting for a 5-year-old.
Kids however, put adults to shame they seem to just accept and move on. Nobody loves Bobby like Freddie does. He is simply amazing with him. Holidays are affected, we can’t go abroad, and we still don’t feel comfortable taking him too far just in case – so this part of our family has been affected too.
My partner’s holidays are now mostly used for operations and hospital appointment for Bobby. My family, my mum and grandparents have been amazing. It’s not just our lives that’s have been impacted it’s theirs too. They take Freddie to and from school most days. My mum comes around before work just so I can get jobs done in the house. It’s certainly a team effort.
Being a carer is a loss of your identity in a lot of ways. However hard and tiring my new job is, the last 18 months have made me a better person, little things I used to stress over now don’t mean a thing to me anymore. Bobby is forever going to be my super-hero being his carer
and being my boys’ mum is by far my favourite job.
I will take sleepless hospital nights, wake up to put sats probes back on his feet because I’m so thankful he’s here and he’s happy.
My day to day routine is like this:
Bobby goes to bed at 6:30pm and stays in bed till 7am, he is a really good sleeper and we are lucky! Once he wakes up its tracheostomy
tape changes, then I suction his tracheostomy.
Turn off his oxygen as he now only need this for night-time. I then put a non-oxygen Swedish nose on his tracheostomy. Bobby will need constant suctioning throughout the day, and we have to check his saturation constantly throughout the day. If he goes to sleep, I have to put his monitor on him then too.
Bobby can only go on a shallow bath as we can’t allow water into his airways, so this has to be a quick and safe job every day.
Whenever I go out now, I have to take oxygen, a tracheostomy box, suction
machine, spare suction, saturations monitor and a normal baby bag.