Tommy was a special little boy from the minute I became pregnant, with suspected luto and his lungs not functioning was told Tommy would probably only survive a hour with us. 8/8/22, 35 weeks pregnant I went into Liverpool womens to deliver him and his twin sister Amaya by c section, Amaya was twin one and a tiny 5lbs 3 then Tommy came into the world 5 weeks early a twin and a whopping 7lbs, well u can probably imagin I thought his dad had done the calculations wrong. Tommy had to have some help breathing when first born but he soon pulled them off and was breathing himself he went to neonatal for the support from the amazing staff there and stayed there for 4 days until been moved to alderhey to meet the specialists, as soon as Tommy was born the doctors soon realised his lungs were okay but he had prune belly syndrome which is where your missing all your stomach muscles and kidney failure is one of the biggest problems with this condition.
Tommy spent the next 3 weeks in alderhey trying to get all his blood levels steady, which is really a difficult balance of different milk formulas and medications. Finally we got a balance so Tommy came home but we were returning weekly for blood tests check ups etc. Sadly at the start of November his potassium shot up and he had to have a emergency operation for a peritoneal catheter so he could have dialysis Tommy was only 2 months old but brave, content with such a loving nature, we spent the next 5 months tweeking formulas and medications he got peritonitis and had to have another operation to have his catheter removed and then again another operation to have a new one fitted, after alot of ups and downs Tommy came home again having dialysis every night at home with his family, then on the 27th of April our lives shattered Tommy stopped breathing properly he went into intensive care where the doctors fount out he had sepsis. On the 28th of April we had to say goodnight to Tommy for the final time. Our lives will never be the same he took me with him when he went to sleep that night but he will live on in his twin and I feel so blessed to have had such a strong brave loving happy little boy to the end. Everyone that met Tommy fell in love with him you couldn't not he was just pure. Rip my sweet boy mummy loves you xx