My son Alfie is now 19 months & also a twin. He has a few rare conditions under Vacterl Association. His most major condition is life limiting and known as hypoplastic left heart syndrome (half a heart) amongst other heart defects on top. The surgeries he has are strictly palliative with no guarantees. He also has imperforate anus, bifid scrotum, hypoplastic left thumb with reduced flex to his wrist & tethered cord. At 2 days old he had emergency surgery for a stoma, followed by a heart cath procedure at 5 weeks that unfortunately failed. At 6 weeks he had emergency open heart surgery with sats at this stage of only 56% Alfie being a twin was still so small despite being monitored and given time to grow on neonates up until this point. Still very tiny only one surgeon agreed to give our boy a chance. His recovery was extremely tough, he suffered 2 cardiac arrests, extreme issues with fluid management & tolerance, collapsed lung twice and needed pacing wires to help his heart work properly whilst he gained strength & recovered. At 7 month's Alfie was struggling and needed a heart cath procedure to place a stent in the pulmonary valve. Recovery again was hard and Alfie was diagnosed with heart failure in fluid management. After trying many medicines we were down to our last option 'enoximone' and thankfully it worked. At 9 months Alfie had a 9 hour open heart surgery the Bilateral Glenn aswell as nended his stent taking down & a very leaking triscupid valve repairing by patch. At 15 months Alfie first sat up! At 16 months he first rolled & rolled! 😉 Alfie has been ng fed since birth, due to being too weak & unwell and is now orally aversive. 2 weeks ago at almost 19 months he had surgery for a gastro tube. In another 2 weeks Alfie will go through a 12 hour bowel reconstruction surgery followed by stoma reversal surgery 3 months later. He already has 2 surgeries lined up for next year & has more to go including at least 2 more open heart surgeries. Alfie really struggles with the heat, yet our garden isn't suitable for him to be out in for very long. With all his surgeries he is often weak & too vulnerable to take him out very far, so we are very limited. It really breaks my heart as I see so many children with Alfie's heart condition pass away so young, many of them babies & young children. We know our time with Alfie is limited & to give him a garden to enjoy and to just play like any other child would truly be a dream come true. Our time is more than precious every moment we have is a gift.
Angeline Taylor 3 months ago
Gooduck you all deserve it x
Hannah Cochrane 3 months ago
This little boy deserves it ❤
Tina Bishop 3 months ago
Good luck Alfie, well deserved xx
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