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


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Harrison

HarrisonHarrison was born near-term on 9th January 1998 He needed resuscitation immediately at birth. He then spent five days on the normal maternity ward as he couldn't keep his core temperature up, and appeared a little jaundiced. He was sent home 'fit and well' on the fifth day.

He spent the next four and a half months struggling to feed, not gaining weight at a satisfactory rate, and catching every illness doing the rounds.

Finally, a health visitor was concerned about his health and sent him to be checked at his local hospital. After a brief assessment he was sent immediately to the Royal Brompton.
HarrisonHarrison was diagnosed at the Brompton with pulmonary atresia, a large VSD, multiple collateral arteries and a right sided aortic arch. His parents were told to expect at least three elective surgeries. A cardiologist also suspected that Harrison had DiGeorge Syndrome (the heart condition being one of the 150 possible symptoms). Soon after this, Harrison grew more tired and stopped feeding so was fed through a tube (firstly through his nose & later through his stomach) for the next 3 years. From then on Harrison spent more time in hospital than at home. He caught some virulent chest infections that took him weeks to recover from, and at the same time he was confirmed as having a 22q11.2 deletion of his chromosomes (DiGeorge Syndrome).

In early September 1998, his breathing became very laboured because he'd contracted RSV (Bronchiolitis) which for Harrison was life threatening.
After another month in hospital he had recovered enough to be discharged, but the infection had damaged his lungs and Harrison was put onto continuous oxygen via nasal cannulae. He stayed on this permanently until November 2000.
HarrisonHarrison underwent his first heart surgery at the Brompton on April 8th 1999.
He had complications after the surgery, and after three more minor procedures he left hospital three weeks later. The second surgery went ahead in August 2000. Harrison recovered very quickly, and was discharged eight days after surgery. He was sent home still requiring oxygen, but it was hoped that his need would diminish rapidly soon after. This was not to be the case. Harrison became more and more irritable, and soon needed more oxygen than ever before. He was extremely breathless, and could not walk two metres without his oxygen levels in his blood dropping to low 40%. This was while he was being given THREE litres of oxygen per minute. This amount gave Harrison severe headaches, and the extreme breathlessness caused vomiting and weight loss. He was sent back to the Brompton only two weeks after going home. The Brompton staff decided Harrison should remain with them until he could undergo a total correction for his heart condition.
HarrisonHarrison had to wait until October 9th for this surgery. His surgeon had gone away for a foreign conference and the intensive care unit was blocked with long-staying cases.

Harrison had a major bleed towards the end of the surgery; the surgical team experienced great difficulty in tracing, and eventually stemming the bleed. The surgeons had closed off more surplus arteries they found, and had fitted a homografted pulmonary artery from the lower end of his right ventricle, over the heart, and reconnected to the junction of the left and right pulmonary arteries. The large VSD Harrison had was patched. His right pulmonary artery was widened. The homograft would have depressed Harrison's right-sided aortic arch onto his trachea and oesophagus, and so the surgeons stitched the homograft onto the chest wall. They had not performed this step before in similar operations. One large surplus artery remained which the surgeons physically could not reach safely.
HarrisonHarrison recovered fairly well initially, but after several days on a ventilator, his progress stalled, and the intensive care team couldn't deduce why. Five days post-surgery, Harrison was diagnosed with parainfluenza and was isolated. This could often be fatal. He spent a month in intensive care and then another three weeks recovering on the wards. It took his stomach a couple of weeks before it could digest food properly, and because he had spent so long in bed, he could no longer sit up or walk unaided.

After four months of intensive occupational and physiotherapy Harrison was able to walk unaided again. Things were going well, but then he started catching recurrent infections again, so is now taking regular antibiotics.
HarrisonHarrison has since had three more heart operations to widen the left pulmonary artery; a procedure which will need to be repeated throughout the rest of his life. The pulmonary homograft will also need replacing in about four years' time. He has had at least nine further cardiac catheterisation and bronchoscopy procedures we have lost count exactly how many. He has difficulties with speech and language delay, although he is of normal intelligence. His immunity has now improved, and is nearly normal, but he can be felled by repeated infections.

To manage his condition, Harrison takes several medicines each day for his heart, lungs and immune system. He has injections for pneumonia and flu and therapy for his speech and language. He easily becomes breathless on minimal exercise.
HarrisonHarrison went to a mainstream primary school for two years but found the experience very tiring both physically and mentally. He also found it too noisy and confusing. He is now home educated and thriving. He has recently achieved levels 2C for English written work, 2A for English comprehension, level 3 for reading and spelling and 2B for mathematics in his key stage one tests. He has started playing the piano, and in three months has been taught at home to play songs from music books with basic chords. He can manage basic French he asked 'je voudrais le steack hache et frites s'il vous plait' in France recently when we weren't expecting it and so we firmly believe that with time and patience most VCFS children can perform alongside their peers despite the expectations that are often set for them.

Throughout his life, Harrison has always been a very happy, easy-going little boy who doesn't complain. He is very cheeky and everyone falls for his charms. He loves using his computer which is invaluable for his education, and plays his Formula 1 '05 game on his PS2 like a pro. He can swim, but his poor exercise tolerance means he can only manage at best around three metres. He currently has tennis lessons, but will unfortunately have to give them up soon as he doesn't have the stamina to play the mini matches. To compensate, he is being introduced to golf as he can participate at his own pace (and it might mean he could drive the carts!). He loves to watch any sport and is very excited about London 2012. He is a real character, an inspiration and a true survivor.