Family B

In her short life she’s been through much, so many operations, endless appointments & therapies.& countless re-admissions to hospital, judgemental stares & whispered comments. When she arrived in this world, instead of the normal joy of bringing my baby home & introducing her to family & friends, I was faced with 9 weeks on NICU, fear & a feeling of powerlessness. The blur of weeks that followed E*’s birth were filled with love , tears & sleepless nights. CHARGE Syndrome, something I had never heard of, was the diagnosis. I had no idea what this meant for my little solider, I was crushed!
When E* was just 7 weeks old we were given the shocking news that our solider needed a tracheotomy, the world crumbled around us as we tried to understand what this meant & how we would cope. It was the first operation of many. Seeing my 7 week old baby with a tube coming out of her neck for the first time was heart-breaking. Why is this happening? She’s so small, she doesn’t deserve this! After the procedure the focus was on us ,E* was doing well, her oxygen levels had improved she would be ready to go home soon, But we needed to learn how to look after a tracheostomy. With the support of nurses, we learnt what we had initially thought impossible, we knew how to change & look after E*’s tube & doctors felt we were ready to take our baby home.
The day finally came, the day I had been wishing for all this time, but once I was faced with it I was filled with fear, I didn’t want to leave! I feared I couldn’t, I wanted to hold on to the door frame of the ward and never let go! The idea of changing a tracheostomy on my own at home without the safety net of the hospital full of doctors & nurses terrified me!
At that time I never imagined having the confidence to do it alone, but it was surprising how quickly it became our new normal. Looking after E*’s tracheostomy now feels just as routine as giving her a bath & brushing her teeth.
People often say how strong I am for managing everything I am faced with, or that they couldn’t do what I do. The truth is we are all capable of finding strength when the only options are to sink or swim. There are times when I don’t feel strong at all but seeing my happy, beautiful little solider grow ,learn & develop gives me the strength I need.


#signlanguage #BSL #SSE #hearingimpaired #tracheostomy #trach #gastrostomy #tubie #complexmedicalneeds #SEND #Chargesyndrome #NICU