Meet Matthew

Anyone who has seen my Matthew knows he is a beauty. Anyone who has met my Matthew knows he is a cutie. Matthew has a very rare genetic disorders called Patau Syndrome - Trisomy 13, We were tortured during our pregnancy - meeting specialists and planning on the arrival of this special baby. But we didn't have amniocentesis due to risk of miscarriage and the information wasn't going to change our plans for the pregnancy. Plans went out the window when Matthew came 5 weeks early, born on 10th of March at 11.40am and everything seemed perfect, 90 minutes later our world stopped, when Matthew stopped breathing.

He was transferred to Craigavon NICU and kept on life support for 4 days, twice we were asked to make christening arrangements, twice we turned it down, we will be having big family christening when Matthews ready to come home! But, afraid that we might not get to take him home, I started a daily diary. Matthew got transferred back to daisy hill - a great sign! Then over a horrific 36 hours Matthew had 6 profound seizures, being resuscitated after each one. Back to Craigavon NICU... for every test the hospital had to offer. Seizure activity was confirmed, central apnea, anaemia, severe reflux, optic disc Coloboma, photo-phobia and myopia. After 38 scary days he was stable enough to come home, we had resuscitation training and open access to daisy hill, but we were terrified! Matthew went home still on apnoea respiration monitor, that he is still on today, along with the seizure, reflux and anaemia medication.

At 5 months Matthews right eye turned white, he had acute congenital glaucoma in both eyes. He has since had 7 surgeries. At his worst he was on 19 medicines and 24 eye drops per day. Feeding became almost impossible. He had to be put on iv fluids during 5 hospital admissions to children's Royal. Matthew has spent about 170days in hospital or at appointments, nearly half his life. Attending paediatric, physiotherapy, o.t, speech, dietitian, genetics, neurology, cardiology, eyes, eyes and more eye appointments. Our paediatrician has very bluntly told me Matthew is likely to be severely developmentally and sensory challenged.... But my Matthew has always had his own plan and I think he might just surprise them all...

Sensory
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