Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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JordanJordan was born on 3rd April 1998, full term, normal delivery, weighing in at 3.21kg (71b loz) with his own hidden agenda.

He was taken into the special care baby unit within an hour of being born by a very concerned midwife where he was ventilated and subsequently diagnosed with a cardiac defect. On transferal to Birmingham Children's Hospital the next day further investigation showed the defect to be double outlet right ventricle, pulmonary atresia and subarterial VSD. At one week he had a central shunt inserted with a plan for total correction within nine to twelve months.

At 4 weeks old Jordan arrested from necrotising enterocolitis and after resection was left with 23cm of small bowel (20%) and intravenously fed with parental nutrition via a central line. At twelve weeks old he arrested with MRSA septicaemia and bounced back. At eight months old having passed from the surgeons to the gastroenterologists the discussion for discharge home began. Jordan, though, had other ideas and for four months had recurrent sepsis of the enteroccocus variety, repeated chest infections and a sudden requirement for continuous oxygen.

He was finally discharged a few weeks before his first birthday on continuous nasalgastric feeding, l8 hours of parental nutrition seven days a week and continuous oxygen. Being at home was heaven!

At fifteen months his heart was corrected although once again Jordan did not make things straightforward as endocarditis was unexpectedly present. This meant the immediate removal of his central line and a chance to see how he would fair without it. The endocarditis was subsequently treated and the central line stayed out for six months.

Unfortunately constant bouts of diarrhoea and repeated chest infections took their toll and in January 2000 a new central line was inserted but regular spiking of temperatures with rygors and no proven source of infection meant it had to be removed once again. This one had lasted twelve weeks, his sites for central venous access were fast running out and we had stern words with him!!

I remember being told if we could get him to two years then he stood a good chance of having better health. At his second birthday Jordan was on continuous nasal gastric feed and overnight oxygen. He had pneumonia during the April/ May of that year and was causing concern. Even the oncologist was called in to review him. By this time there was seemingly no department that hadn't reviewed him!
His medication was also changed at this time, he was put on omeprazole for his reflux and started on co-trimoxozole prophalatic antibiotic. And that was his turning point. I can't even remember without digging out my diaries at what point the parental nutrition stopped and the central line came out! But it was around that time.

Jordan started to attend a mainstream nursery one afternoon a week which he loved. He started to show signs of having the strength and inclination to walk (he walked at 3) and his general development improved in leaps and bounds. Despite minor problems with soft palate and nasal regurgitation he started to eat more food orally aided by the cook at the nursery who, over the next few months, increased the texture and consistency of his meals to the point where he was eating 'normally'. His speech and communication issues became HIS biggest frustration.

At 31/2 Jordan started at mainstream school in the nursery year with 100% support. He still has and needs that 100% support. He is now in first year juniors, aged 8. He endured so much medical intervention in his first two years that life seems so simple now at times. And then you start thinking about education and I feel my blood boil! He loves school but he is beginning to slide backwards and I am battling with school to ensure that his needs are met. But he is unaware of all that and in some ways that is a good thing. He receives Speech & Language therapy weekly in school from the specialist and twice everyday with his 1:1. Palate surgery is not on the list of options at present as he has improved so much with intensive therapy. But it hasn't been ruled out in the long term and he can still bring half a fishstick back up through his nose and you know when he has been eating chocolate!!

For a child who was so immune deficient as a baby he hasn't had chicken pox yet (its in school every other half term and even Hollie, his younger sibling has had it!) and he never seems to pick up the sickness and diarrhoea bugs. In fact he has one of the better 'sick records' in his class. He loses more days to hospital appointments.

Jordan is still heavily reliant on additional calories 800 minimum extra a day which he gets from two cartons of Paediasure plus. The rest are from normal meals, snacks etc and he rarely stops eating! His weight finally hit the 18kg mark last week. That is the first time he has put on a kilo in less than a year! It took him two months can we possibly be turning a corner on his weight too?

Jordan will require further cardiac surgery. He has a valve that was affected by the endocarditis that will need to be replaced we were told any time between when he had his repair at 15 months to when he is 15! His pulmonary artery also needs widening.

He came off overnight oxygen last August and immediately became more settled at night. We are awaiting the results of a chest x-ray done last week (his first in 5 years) but as the Consultant put it 'he is presenting well'!! He still requires oxygen when we fly and despite a stressful night flight home last year we haven't allowed that to put us off flying again this year.

Jordan LOVES football if he put as much effort into his school work as he does his passion for watching football he would be a genius!! He has been able to attend the junior coaching programme at school this year and has loved being able to join in where he can with his peers. He also has a season ticket to watch Birmingham City. Sadly they were relegated at the end of last season into the First Division although all us parents are happy as his ticket was 200 cheaper for this coming year!! He enjoys swimming but we have had to invest in a wetsuit for him to keep him warm even in 30 degree sun and a heated pool!

Jordan has always been a very sociable and happy little boy and likes to join in as well as enjoying his own company at times. He has never been into imaginative play but is very good with IT!

Jordan was joined by a sister when he was 21/2. Hollie is beautiful, bright, sassy and an amazingly empathic and caring person for someone of her age - we reckon she's older than 5!! They are also now joined by a step sister, Amber (10) and step brother Callum (11) and share their time between our house and their dad's. He just seems to have taken all this upheaval in his stride.After a year in isolation in hospital and loads of different people always in and out I guess that isn't surprising.

Jordan turned our lives upside down. He makes us laugh, he makes us cry and he is cheeky like all other 8 year olds we know. We are enjoying his current run of 'good health' and life seems very normal but we are realistic and we know it can all change tomorrow. How prepared we are for that will only become apparent on that day.