Luke with a Complex Collection of CHD’s

England

Luke was born in the middle of March 2006 and declared a healthy, if not small, bouncing baby. For the next 24 hours I felt sure something was not right with him but what? The doctors and midwives said “he was fine”. I was just over anxious right? Wrong! The following day Luke was rushed to intensive care in a dire state and that is where our story begins.

Luke was sent to Alder Hey where he was diagnosed with having a very complex collection of CHD’s. All we knew at this point was that our gorgeous, perfect baby needed open heart surgery or else he wouldn’t survive. To be honest those first few weeks passed in a daze just waiting each day for him to be big enough and strong enough to have his operation. Then at two weeks old he couldn’t wait any longer and he made the decision himself that he needed his first surgery.

Eight and a half hours later Luke was back on PICU in a critical condition but he fought hard and after four weeks was back on the ward preparing for home.

Once home, life became a whirlwind of appointments, medicines, and feeds via his nasagastric tube. He slept a lot and was too tired to feed and over the next six months he gradually deteriorated and needed more surgery. His next open heart surgery happened in October 2006 and lasted FOURTEEN long horrendous hours. There were lots of complications but we never gave up hope, and again Luke battled on and pulled through showing everyone just how strong he was and that he wasn’t going to let anything stand in his way. By now life in the hospital had become normal to us and sadly we started to become used to the sadness and difficulties around us and indeed in our own lives.

Once back home Luke was still on a heap of medication and the kitchen became to resemble a pharmacy. He had a gastrostomy inserted as he still wouldn’t feed for himself and life was never going to be the same for us again. However, despite what was going on Luke remained such a happy little boy: playful when he wasn’t too tired and always full of laughter and fun. Even after a series of gastric bleeds he just carried on like only a toddler would. Eventually we knew the time would come for his next surgery and in September 2008 he went down to theatre for his third open heart surgery, this one lasting twelve hours. This time surgery came as a huge relief to us as it meant Luke could have a chance at being less tired and less poorly and would hopefully lead a far better life.

His surgery went really well but not long after he ran into complication after complication. First he had to have drains reinserted for fluid on his lungs, then he got an infection. The infection had spread to his breastbone and all around his heart and eventually even inside his heart. He was extremely poorly and had to be taken back to theatre to have his sternum reopened, left open and cleaned out every other day. The outlook was not good but again he defied everyone and bounced back. It was a long slow process but he did it. During that time he was even awake and breathing for himself with his sternum open. Something that never happens but something Luke insisted he did. He didn’t want a ventilator, he just wanted to sit up and play and colour and watch his favourite films whilst everyone else just looked on in disbelief. A patient with his sternum open?? How does he breathe?? Only Luke can answer that, but then only Luke does a lot of things.

After all his infections and months and months of antibiotics he could no longer absorb feeds so was put onto intravenous feed (TPN) delivered via a central line. Despite this he came home to continue his therapy and even started school!! Nothing can get in Luke’s way of having fun and doing what everyone else his age does. He then suffered numerous line infections and another round of endocarditis and so his central lines had to go and they had ran out of places to use so very slowly and with medication he built up his milk feeds overnight again.

He will need more surgery in the not so distant future as unfortunately his conduit and arteries do not grow with him. They are already narrowing and so again we play the waiting game that to us has become life. In the meantime, no matter how tired and how much he struggles throughout the day Luke remains the happiest and cheekiest boy I know and everybody who meets him thinks the same. He is an amazing child and we all owe that to his wonderful team of doctors, surgeons and nurses.

Wrote by Kelly Jayne Mullins
April 2010

Kelly Jayne has kindly given CHD-UK permission to use the photographs on this page