Luke's Story

Double Outlet Right Ventricle - (DORV), Pulmonary Stenosis - (PS), Ventricular Septal Defect - (VSD).

Luke was born on the 12th October 1984. We had a normal pregnancy and normal delivery. I remember laying in hospital thinking how lucky we were to have our pigeon pair and two perfectly healthy children. He weighed 8lb 4oz. He fed well. Once we were home we started having trouble with his feeding and sleeping. He would feed for a little while then go off to sleep. It was hot, so I used to feed him with a wet cloth under his head because he was sweating. At his 6 weeks checkup (at which he had a cold), we were asked to go and have an x-ray and blood tests (thinking that it must have been for his cold). On returning we were then asked to see a paed. (again thinking it must be for his chest, maybe bronchitis). Well that is when the bomb hit. We were told that Luke had a congenital heart defect. He thought I knew what I was there for and told me exactly what he thought was wrong, confirming my doctors diagnosis. Well I just burst into tears. He then realised that I did not know. He said he thought Luke had a congenital heart defect called Tetralogy of Fallot. Said we would need to go to Brisbane for tests. I cried all the way home to my husband. We could not believe our little boy had anything wrong with him especially something so major as his heart.

We could not fault the service and care we received at the Prince Charles Hospital. There dedication to the kids goes beyond the call of duty. After doing an echo which took over 2 hours to do, they said that they needed to do a catheter, but we would have to wait a week to have it done. The day came for the catheter, Luke decided he did not want to go to sleep and so Sister Morris carried him around till he fell asleep in her arms, coming up to me to give him a kiss on the head before she took him away. I came back to the nursery expecting to find Luke sedated, but instead he was hooked up to a drip of heparin.   The diagnosis after the catheter changed to a DORV Double Outlet Right Ventricle, Pulmonary stenosis, and a large VSD. They hoped to be able to leave corrective surgery until he was 4-5. That way everything would be big enough, but they may need to do a palliative op before hand.

From the time we arrived home Luke started going blue. We were told that was normal. At age 3 months he started have cyanotic spells. He was then put on propanolol. This seemed to help for a little while. He cried most of the time and was a very unhappy baby. He never slept much. 3 hours being the longest he would sleep in one stretch. You could almost set your watch by him. Its amazing the positions I found myself in with him asleep on my shoulder. I even got into his cot one night. (luckily his grandad had built it strong enough). He hated laying on his stomach, so learnt to sit up by the age of 5 months.

Luke was having blue spells quite regularly, so they decided that we couldn't wait any longer and would have to do a Blalock Taussig shunt.

Luke had this done on the 9th July 1985. The surgery went really well. The nurses said I had a smile like a Cheshire cat and all I could say was "he's pink".  We went home after 10 days with a very happy little boy. His only medication was aspirin.  After his shunt it was like someone had put a new battery in him. Within 2 weeks he was sleeping through the night and feeding like a charm. (which we continued to do until he was nearly 2 years.) Luke crawled at 10 months and walked at 14 months. He was a happy little boy who was very content to sit a play.

I was lucky enough to join a heart support group in Brisbane called Heart to Heart. They were a great bunch of ladies with a tremendous sense of humour. The founder of the group has become my best friend. I then became the branch leader in Cairns, which I been for the last 18 years. Heart to Heart is now Heartkids Qld.

Luke wanted desperately to play sport, but the cardiologist wouldn't allow him. He would sit there and ask her if he could play all these different sports, but her answer was no to each of them. We finally settled on Joeys (one below cubs and two below scouts) He went but didn't really enjoy it.

Finally in March we were given a date for surgery. (28th March 89). We were told to come down 5 days earlier so that they could wean him off his aspirin and make sure there were no complications. It was Easter weekend and surgery was scheduled for the Tuesday. The hardest thing for any parent is to see your child being wheeled in for surgery, not knowing whether they will see them again or not. That is where I broke down completely. I found I could be strong at other times except then. Luke came through the operation very well, though he did have tachycardia and his liver was enlarged. His medications were chlotride, and spironlactone. 8 days after surgery Luke went white. He lost all colour and his lips looked transparent. It was then that he started sweating excessively. We were having to change him and his bed a couple of times a night. A 24 hour holter plus blood test to check his white cell count were done. No conclusion to the white spell or sweating were found. His colour was still not good, so they kept him in hospital for an extra 5 days to watch him, as it was a long way to go home (1700 klms).

We were discharged on the 10th April. Luke started to sweat at home and his pulse rate was up to 120 - 130. He was also getting out of breath and making grunting noises when he breathed. On seeing the paed. he thought Luke looked anaemic, so ordered more blood tests. Luke's colour now looked more yellow. His preschool teacher remarked that he had gone from blue to yellow. Luke had gone back for a visit to have their school photo's taken. Over the next week his liver enlarged even more, so his diuretic's were increased and an echo was ordered. It was found that Luke's patch had come undone and was leaking.

We were sent back to Brisbane on the 8th May with Luke in gross heart failure. Luke was sent for further x-rays, blood tests and another echo and  was put on medication. The results of the echo weren't clear enough so they decided to do a catheter on the Thursday. The results showed that the patch had indeed come undone they would have to go back in and close it. Surgery was scheduled for Monday 15th May. Luke went up to theatre about 4.30pm. This time Luke didn't pick up like last time. They had more chest drains in and he was very restless, so they sedated him with morphine. His breathing tube was taken out the next day. His pulse rate was still 140, and his chest was very rattly. He was taken down to paed. ICU on Wednesday. His sats weren't very good and he was still on oxygen. He was also retaining fluid so a catheter was used and he was put on lasix. That night Luke started having irregular heart beats, and started vomiting. Another echo was done and showed the patch had lifted again in another place. They wanted to wait till he had a little more strength before going in again so decided to put him back in post op ICU until next week so they could keep a close eye on him.

Just as well, as 2 hours later he went into failure, his heart rate was 300. We were asked to leave the room, the defribulators were asked for. Well that was it for Ken & I, we just broke down. One of the nurses came and got our 7 year old daughter Belinda and took her down stairs to the ward and looked after her. We thought we had lost him, but then the door opened and we were asked to come and sit with him as they had him stable. Then it happened again, Ken and I were in a total state of shock by this stage. We were asked to come back in and sign consent forms as they were preparing him for emergency surgery. We gave him a kiss goodbye and watched as they wheeled him down to theatre. The nursing staff were tremendous, very caring and supportive. Finally we were asked to come back up to post op, the surgeon walked in eating an apple so I knew everything must have gone well. They had overstitched and reinforced his patch, but were paralysing him so that he couldn't move. Ken went back to the room to have some sleep. I stayed with Luke until a nurse grabbed me and a pillow and told me to lie down in the doctors room and get some sleep. I remember laying there not being able to close my eyes, then crept back to his bedside. It got to the stage that when the beepers etc. went off on my side of the bed, they'd get me to reset them. He didn't loose as much blood this time, but he was still transfused as he had a low HB.  On Saturday they noticed Luke had a pneumothorax, but as it wasn't getting any worse they would leave it. Luke stayed in ICU for 4 days before going down to paed ICU. They had also left his central line in just in case. He seemed a little brighter this time. Tuesday morning when I arrived at his bed he was sitting up in bed complaining that he was sore. His left side of his chest and shoulder was swollen. The pneumothorax has progressed. After x-rays were taken a drain was put into his left side to let the air out. It took a few days for the swelling to go down. Luke felt like rice bubbles to touch.

Luke started school the following year (1990). He had one week at school and then the next in hospital with suspected bacterial endocarditis. Luckily it turned out to be a really bad case of tonsillitis. It took him six weeks to pick up, as he was very pale. After that he started getting chest pains while running around at school, also his hands started going icy cold and sweaty on excertion. So I started going down to the school every lunch time to take him to the library to read to him (much to his disgust). The chest pains continued, so a 24 hour holter was done. Nothing seemed to be found. At the end of the year Luke's cardiologist decided he would do better on Captopril. The captopril really made a difference. Luke continued to have his ups and downs, luckily more ups than downs. His hands still go icy cold and sweaty on exertion, it is my tell tale to whether he has been over doing it or not. He can tell by the look on my face when I come up to him and he holds out his hands to let me feel. No explanation can be given to us about his hands. They say it is heart/circulation related.

The next year brought a new era into our lives. We decided to have another baby. Luke was 6 at this stage. I wrote to his cardiologist in Brisbane and told her that I was pregnant. She said that Luke could come down for a check up and she would do a fetal echo on me. The appointment was made for May, that way I would be 20 weeks. Luke at this stage was still getting puffed and having chest pains. When the surgeon came on his next visit he decided to do a stress test. I told him that we had an appointment in May, so he arranged it for then. My fetal echo went great, with no defects being found. Luke's stress test also went ok, but no explanation for the chest pains.

Our new baby daughter was born on the 21st November. Luke wanted a baby brother, but had to be content with a another sister. (as we were not having any more) Well a certain little miss coming into our lives certainly took the pressure off Luke, his neurotic mother had someone else to occupy her mind. Aimee ended up with reflux, ear infections, and croup in the first few months of her life. and asthma until she was 5.

At school that year they had a cross country race. I told Luke he was not allowed to go. All the teachers and the principal knew he wasn't allowed to race. Well Luke being Luke, decided he would sneak into the race without anyone seeing him. The first thing anyone knew about it was when he was coming down the finishing track. The principal rang me and apologised. I told him it wasn't his fault and we would deal with Luke after school. So we had to sit him down and explain to him all the things that could have gone wrong. The next year after a long talk, we let him go in, but with a warning. He still over did it, and we had to get the ambulance guys to look at him. He had tachycardia, so it was just a matter if keeping his breathing steady and calm. (Mum's nerves weren't calm, but I couldn't show him that).

Our family owes a lot to the dedication of the doctors and staff of the Prince Charles Hospital, for without them we would not have Luke today.

Thank You.

Updates on Luke's Progress