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Patient Story:

AJ's journey with HLHS


We had never heard of Hypoplastic Left Heart Syndrome (HLHS) and to have our unborn child diagnosed with a heart defect at twenty weeks pregnant was a massive shock. We were to learn that our baby would be born with only half a heart working. To people with no medical background this seemed impossible.

This defect in our little baby was the start of a roller-coaster ride for our small family. Our second child Alexander John was born in May 2009 at Westmead Hospital and was quickly taken to Grace Neonatal Intensive Care Unit at The Children's Hospital at Westmead. Thus began a long and sometimes extremely difficult time for our little man.

The plan for AJ was to have three open heart surgeries - one at 3 days old called a Norwood procedure, one at 3 months old called the Glenn and one at 3 years old called the Fontan. Our expectation was to come home from hospital when he was about 6 weeks and return for the Glenn. But we quickly learned that the world of medicine has no deadlines and AJ would do things his way and only when he was ready.

His first procedure was a central line in his belly button. I remember being concerned about how his belly button would look when he grows up. How naive. He had his first operation (the Norwood) at three days old. This went well. I recall first seeing him after this operation in PICU and feeling a mix of emotions in the seemingly chaotic environment. We had a series of machines to support and monitor him. We wanted to be able to touch him and the only place not covered by wires and tubes was the top of his. Eventually this would be used too!

Thanks to Dr Winlaw, Dr Cooper and their team, AJ's Norwood operation had gone to plan and his heart was going great, but he was not progressing well. It was discovered there had been a problem with his phrenic nerve, a nerve that passes very close to the heart that controls the diaphragm and is very important for breathing. What this meant for AJ was a paralysed right diaphragm and partially collapsed right lung. The doctors decided to correct this with a procedure to tighten the diaphragm. This helped with the right lung but AJ was still struggling to breathe by himself. We were looking forward to getting out of PICU and down to the Edgar Stephen Ward. A few steps closer to home.

When the time came, we packed up AJ and the 50-odd teddy bears he had been given and trundled him off to the ward. This would be short-lived. Two hours later AJ was not coping well and it was decided to return him to PICU where he was put back on breathing support. Several weeks went by and several failed attempts to get him to breathe unaided would lead to his darkest hour. He had a collapse, his heart stopped momentarily. The nurses and doctors in PICU were very quick to react and saved him.

The doctors decided that the best course of action was to give AJ a tracheostomy so that he could be ventilated via a hole in his neck until he was able to breathe on his own. This was a major concern, not only for us but for the surgeons. AJ was still in PICU, connected to a ventilator and showing little signs of improving. I remember wondering if this little guy was ever going to be able breathe without help. We had seen other HLHS kids come and go and we were beginning to wonder if things would ever get better. Just when we thought things couldn't get any worse, within a week AJ had started having seizures and an MRI confirmed there had been a lack of blood flow to the brain and he had suffered a stroke. AJ was getting worse, not better, and he was missing out on all the normal baby stuff like learning how to suck, tummy time and simply cuddles with mum, dad and his big sister (who is still stealing cuddles from AJ three years later, trying to catch up on them). As you can imagine he missed a lot of the developmental milestones in his first few months, but at age 3 is catching up.

Our daughter Ellen was just 2 years old when AJ was born and she has given us so much strength and joy. Blissfully unaware of what was going on around her she would sing and dance her way through the corridor of ICU, beg to go to sibling care in the hospital and sit with AJ and watch Play School. Occasionally she would even have a sleep in bed with her baby brother. She had a good time with all the nurses and they made her feel very special. Ellen of course thought all babies started life as AJ did and would ask about when she had a thing in her throat and a feeding tube down her nose. I honestly don't believe I would have coped as well without Ellen around. Her innocence, love and contagious laughter was the best medicine for me.

The second major heart operation for AJ was the Glenn when he was 3 months old. Looking at him before he went in for his surgery I was thinking 'this is the best you have been, I wish you didn't need more surgery, what if we have complications like before, this could be a huge step backwards.' But this time the surgery went as expected with no complications and his recovery was normal from this operation.

The weeks turned to months in PICU and AJ made slow and steady progress. At 5 months old we took him outside for the first time. We were extremely daring and with 2 nurses in tow we ventured to the hospital's Chinese gardens. Our little man was startled by the wind in his face and it kept taking his breath away, just like when you blow on a baby's face. It was a fantastic feeling and gave me a lot of hope that we would one day get out of hospital. Our very extended stay in PICU of almost 7 months was coming to an end. AJ had taken a long time to breathe on his own and free himself from all breathing support, but after a lot of hard work from the PICU team and himself at 6 months of age AJ finally achieved freedom from the machines. A couple of weeks later we moved to Edgar Stephen ward and then home.

AJ went home with a feeding tube and tracheostomy. We had to learn how to stick a feeding tube down our baby's nose into his tummy and also how to replace a breathing tube in his neck before we could leave the hospital. Not exactly what we had planned when thinking about having a second child. But here we were with this precious soul that needed a whole lot of TLC.

AJ has managed to get on top of all the complications and as the years passed he was free of all the tubes. His trache came out for good just before his 1st birthday and it took until just after AJ's 2nd birthday to get him eating well enough to take out the feeding tube. AJ's feeding problems didn't come from just one thing - he has a partially paralysed vocal chord and this means he couldn't protect his airway properly and sometimes food would go down the wrong way. Because of this AJ became to scared to eat because it was such a negative experience. It took many trips to the feeding clinic, speech therapist appointments at the hospital, a circus act at home around meal times and my good friend, chocolate, to get AJ to eat.

One thing I have learned from my time in hospital is to be careful what you wish for. You know how they say 'don't compare your child to others' at school, well, this is even more true when they are ill. Even kids with the same condition as AJ seem to take a very different path but all were on a roller-coaster ride - sometimes accelerating in the wrong direction and other times painfully slow in the right.

AJ at 3If you ever find yourself in hospital with your child try to take it a day at a time, forget deadlines and get strength from those little people who fight to exist no matter what and know nothing else. AJ has come home from hospital and is recovering from the third open-heart surgery, the Fontan. The surgery went well and after just a week in PICU and spending 5 weeks at Edgar Stephen Ward waiting and waiting for his chest drain to stop draining we got to go home. Ellen is now 6 years old and much more aware of what's happening to her little brother. I was really worried about her this time around and I am amazed at how well she has coped with the shake-up of her family and home over the past 6 weeks while AJ has been in hospital and seeing him looking very unwell. Our children are so resilient I truly believe we could learn a lot from them and a some of their anxiety is just a reflection of our own. In those early days of AJ's life it felt like I had been to hell and back a few times but what I was feeling must be nothing on what his little body and soul has. And with hell comes heaven, the most courageous, content, loving, smiley little man. Thank you to each and every doctor and nurse (there are many of you) who saved my little man and my family time and time again.

Related links:

Patient Stories

Hypoplastic Left Heart Syndrome

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