BiographyDaire was born on the 17th June 2002, weighting 7lbs 14ozs, after a traumatic birth resulting in an emergency c-section due to prolapsed cord.
Doctors didn't notice anything wrong with Daire at birth, but within the first days of his life I noticed that Daire couldn't breastfeed and while still in hospital he lost 1lb in weight and was admitted to the NICU, he came home days later on bottles. He cried 20 hours out of 24, he threw up more than he drank. I was told by the DHN that he was colicky, so I bought ever bottle and drug available, but to no end. Then she told me he could be teething, again I bought all sorts in the hope this would help him, but again this failed. He also wasn't bonding, as my older son had done.
I admitted him to hospital at 12 weeks old, as I knew something was wrong and suspected cerebral palsy. They did all sorts of tests on him over the course of a week and eventually gave us the diagnosis of bilateral frontal Polymicrogyria. I was asked at this point if I wanted to take him home..... or leave him there and abandon him, as his outlook of life expectancy was bleak. He was my child and be was coming home.
BFPMG has left Daire a non-verbal, quadriplegic, with severe feeding and respiratory issues, incontinent and in recent years he's been diagnosed with severe scoliosis and kyphosis as well as epilepsy.
After battling for almost two years to get him to gain weight on a high calorie diet. He continued to fall below the acceptable level on the medical checks. 'Failure to thrive' was the buzz words with the doctors when describing him, so when he was almost 3 the doctors agreed to put in a feeding tube. This did in no way solve all our problems, but it took the pressure off and we were no longer forcing food in his mouth even when he was crying. His reflux was still an issue and he was vomiting most days up to 10 times, we tried different feeds, different rates, he had endoscopes, ph tests, sleep studies to try find a cause, but nothing worked to ease this issue.
He was in and out of hospital with frequent infections, respiratory issues, ongoing vomiting. He's had loads of operations from hamstrings, salivary gland relocation, abductor muscles, double hernias, Botox injections and more recently spinal growth rods due to severe scoliosis.
While waiting for the spinal rods, Daire's overall health diminished significantly and his hospital admissions became more frequent. He missed 156 days in one school year due to breathing issue or infection. His then pediatric consultant wanted him on Palliative care, as she saw it 'Daire should have no more invasive procedures done, as it was now all about quality of his life, over quantity!' I will never forget those words, but thankfully the other consultants he was under didn't agree that he had reached that stage. She did finally agree to give us the go ahead for home oxygen etc. which helped lessen our trips to hospital. She was also the Dr who reckoned his frequent vomiting was due to psychological or behavioral issues??
Daire had the spinal growth rods inserted back in May 2011, which changed a lot of things for him, he was able to see the world around him again, he was able to breath better, the vomiting wasn't as frequent. He was able to go back to school full time. He has since had 4 lengthening done on his spine and will have more in the future.
He suffers with constipation because he's unable to stand upright or move, so his bowels don't work properly. He has a standing frame in school to help him weight bear etc.
He was diagnosed with epilepsy in March 2013. Which is well controlled thankfully, but does appear when he is unwell or run down.
Daire was seriously sick last December with RSV pneumonia and CDiff. Even the ICU team were involved in his care, we really didn't think we would get him home, but home he came after several weeks. Having him home meant round the clock, oxygen, chest physio, nebulisers and suctioning, just to try keep his airways clear and his oxygen levels above 90%. It took a further 3 months, before he was well enough to return to school and even now his lung function and food tolerance levels, aren't as good as they were and may never return.
Daire is despite all this a very intelligent, curious, fun loving kid, who loves being outdoors and has a whacky sense of humor. His laugh is contagious and his smiles light up a room. We have been told on more than one occasion he won't pull through , but against the odds he has done. We live each day knowing that we are not guaranteed having him tomorrow, so each day we see his smile is a bonus.
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