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


Adam

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Seth

SethTummy trouble?...
No, toddler Seth Alun-Jones snatches a bite to eat via his gastrostomy button.

Seth, who is 21-months-old, was born at 32 weeks weighing a less than hefty 3lbs (1.5kg). He was diagnosed as having a TOF (tracheo-oesophageal fistula), oesophageal atresia and duodenal atresia and transferred to Birmingham Children's Hospital. "At least he hasn't got any heart problems," sighed mum and dad with relief - big mistake.

Despite a six hour operation to repair the problems already diagnosed intensive care staff were mystified when Seth failed to thrive.

Attempts to take him off the ventilator and transfer him to a neo-natal surgery ward repeatedly failed. Two weeks later, on New Year's Eve, an echo revealed Seth's heart had a large ventricular septal defect and coarctation of the aorta, both needing repair, and he was booked into surgery the following morning. Not the best way to start the year!

Seth, still just slightly larger than an Action Man doll, pulled through another six hour operation marvellously but there were more problems ahead. He had severe reflux, common with TOFs, and apnoeic episodes. Still failing to thrive and still tiny, a decision was taken to perform a Nissen's fundoplication and to insert a gastrostomy tube. Seth was five-months-old, Birmingham Children's Hospital was more familiar than home, and by now he was suffering from chronic lung disease as a result of repeated aspiration.

The fundoplication was the turning point and, for the first time, his health began to improve. There were, and are, hitches - Seth aspirated his saliva and hospital looms with each bad cold - but he's now thriving.

Genetic testing did not show any kind of chromosome deletion and we have been told his problems were all congenital abnormalities.

Seth has now developed a sophisticated 'gagging' mechanism to protect his airways by expelling saliva. Unfortunately, this also means he doesn't seem able to swallow food or milk.

So every three hours we pull out the feeding sets, plug him in and fill him up. Hey presto, one growing baby and no toddler food tantrums - what more could a parent want.