On the 11th October 2010 – her birthday – Sarah Keogh sat in Holles Street in utter shock. She and her husband had just been given the unexpected news that their baby had spina bifida and hydrocephalus.
“We are lucky that it is a relatively well known condition, especially here in Ireland where it occurs in 1.17 per 1,000 live births, which is 10 times the rate in the US. Our doctors are well used to dealing with the condition and those who see these kids grow up are positive about their quality of life.”
Luca was born on the 15th February 2011 by c-section and two days later he was taken to surgery. They began the long procedure to close the opening in his spine. His family battled with feeding issues over the next few days but got through it together and he progressed really well. He came out of the incubator earlier than expected and finally got to wear his clothes! When he was a week old Sarah and her family were dealt another blow when they were told that Luca needed a shunt fitted to control his hydrocephalus.
“His head size was increasing as he wasn’t draining cerebral spinal fluid properly. This wasn’t really a surprise as about 80% of those with spina bifida also have hydrocephalus but we had obviously been hoping he wouldn’t be one of them.”
His shunt was fitted that day during his first ever brain surgery and he began to make progress once again. Luca was 10 days old when they were finally able to take him home to meet his big sister Freya, who had turned three the day after he was born. Luca is four now and he is still the same determined little guy who does things his own way with his cheeky grin and a wicked sense of humour.
“We have spent a lot of time in and out of Temple Street for routine appointments as well as for many surgeries. Luca has been very unlucky with his hydrocephalus and has required another nine brain surgeries to try and control it, as well as another seven spina bifida related surgeries.”
Luca attends various therapy appointments, including private physiotherapy in Limerick. Over the last two years he has done 20 weeks of intensive physiotherapy, working for two hours a day, five days a week. This has helped Luca progress in ways that his family never imagined.
“While our last 5 years have been tough for all of us at times and the road ahead for Luca is not clear, we know that with his determination and with the team he has behind him that he will meet every challenge and come out on top.”