Lukes conditon was detected at my 20 week ante-natal scan. We were immediatley sent to London for further testing and further details of his condition and the implications for life and chance of survival. Hypoplastic left heart is one of the most severe congenital heart defects. There are only the two right-hand side chambers to the heart. No left hand chambers at all ! The children have to completely have their hearts replumbed through a series of 3 open heart surgeries in the first few years of life.
Lukes condition meant he had to be delivered at Guys hospital London where he went for his first open heart surgery at 5 days old. He came through surgery quite well and then had a 20 minute heart attack in Intensive care. He battled on and at 9 days old, Christmas day, he was taken off the ventilator - the best Christmas present ever !
Many more weeks in hospital followed , then several months at home before his next open heart at 9 months, another at age 3 , and then yet another at age 7. In between times he has had another 13 anaethatised heart procedures and surgeries.
He is now 16 and struggling to come to terms fully with his prognosis. He knows he will need a heart and lung transplant in order to try and continue to lead some semblence of a normal life.
Luke uses Little Havens, our local hospice, and is currently their head boy. A role he jas been very proud to take on.
Despite all this Luke lives life the fullest way he can and his determined approach to life makes me proud to be his mum !