Jackson’s Story -December 2013
I want to start Jackson’s story on a positive note. He is an incredibly handsome and happy little boy who is surrounded by people who are committed to making his life the best it can possibly be. He leads a fulfilling life and above all he is loved a tremendous amount. He attends a wonderful school for children with special needs which he loves. He adores being in the water and he is lucky enough to use the school pool twice per week. The school staff are amazing and enrich his life whilst promoting his development. He rolls and wriggles and laughs and plays. He can drink from a cup all by himself and he now eats three meals a day plus snacks! After years of being tube fed, I am amazed every time he opens his mouth for me to spoon in the food. He pulls my hand towards him as if to help, or perhaps to say “come on, I’m hungry!” He tries very hard to sit up on his own and I know he will do it one day. He is a pretty awesome little dude.
And so on to the facts:
Jackson Matthew Bromley was born at full term at twenty two minutes past midnight. He weighed 6lb14oz. I had been in labour for 54 hours so my memory is rather vague but I do remember that he didn’t cry. I knew as soon as he was born that something was wrong but the nurses assured me not to worry. He had a large birth mark on his forehead, his eyes were prominent, his hands were bent at a strange angle, his palate was very high, he had a triangular shaped head and he had lots and lots of hair. I now know that all these features are common in children with Bohring-Optiz Syndrome.
He would not latch on and did not feed properly during the three days we were in hospital but we were still allowed to go home. I had to express milk and squirt it down his throat from a bottle. At twelve weeks old, after continued failure to thrive, the doctors agreed that Jackson had some sort of undiagnosed disability. A Naso-Gastric tube was decided upon and so we began an alien feeding regime of pouring milk down a tube directly into Jackson’s stomach. Looking back, I wish I had resisted when the doctors suggested a feeding tube but I was a new Mum and didn’t really know what I was doing!
The Dieticians drew up a feeding plan which Jackson’s little stomach could not cope with and he vomited many times each day for over a year. Often up to 20 times a day. I wish I had trusted my mother’s instinct and reduced the volume of milk I was giving him. But that is in the past and I have learned a valuable lesson: Mother always knows best. Nowadays, I question everything and make sure that I am 100% happy with what the Doctors are suggesting.
In March 2008 Jackson was diagnosed with the extremely rare genetic condition Bohring-Opitz Syndrome and this was later confirmed by DNA testing. Having a diagnosis was not important to me and has made no difference to how Jackson is cared for but it has made it easier when explaining to others what Jackson’s disability is. People seem to be able to accept and understand better when there is a ‘label’ attached. It has also meant that I have had the huge benefit of talking to other families of children with BOS and this has proven to be a great source of support over the years.
Jackson’s short life has been full of difficulties and he has had many hospital admissions for various problems including severe feeding problems, apnea, reflux, chest infections, croup and latterly epilepsy. Since June 2012 he has suffered numerous ‘tonic clonic’ seizures which last up to an hour. He has also had several operations which have helped him a great deal including a tonsillectomy, fundoplication, gastrostomy and major hip surgery in March 2013.
Jackson has severe developmental delay which means he doesn’t look you in the eye, he is unlikely to ever be able to speak, he will never walk, he has no capacity to really understand the world around him but he does know when I and others he loves are near, and responds in subtle ways. Caring for Jackson is comparable to permanently having a six month old baby because he is completely dependent on others to tend to all his needs and keep him safe. Bohring-Opitz Syndrome is not a terminal illness, however it is life limiting meaning Jackson is unlikely to survive into adulthood. Knowing I will lose him one day breaks my heart but it makes me determined to cram in as much fun and love as I possibly can into each and every day.
I along with my family and his school teachers, therapists and carers, enjoy the small signs of progress Jackson has made over the months and years. Despite all he has to endure he is strong and brave and funny and cheeky and loving. He gives me the strength to keep going when it seems that there is no point. He has made me into a better person and I am truly honoured to call him my son.
EDIT April 2014:
My wonderful wee boy passed away peacefully in his sleep at 2am on Tuesday 4th February 2014. The post-mortem determined “unexplained natural causes relating to underlying syndrome”. May he rest in peace.