*warning – Damon’s Story contains potentially distressing content and images*
Did you know that in your 20 week scan – when the sonographer is looking for signs of Down Syndrome – the likelihood is over 10 times greater that your baby may have a heart defect?
Did you know that 6 babies are born every day with Childhood Heart Disease (CHD)? This means it is one of the leading Australian birth abnormalities.
Heart Kids Queensland have 5 simple, but crucial, heart questions that every expecting mum should ask their sonographer at their 20 week scan.
- “Do you see 4 chambers?”
- “Do you look at the arteries or outflow tracks as part of the scan?” CHD can sometimes be missed if they only do a ‘chamber view’ rather than a specific ‘artery view’.
- “Is their heart rate normal?” Normal is usually 120-180 – anything under 100 is too slow, and over 200 is too fast.
- “Are the arteries hooked-up correctly, and the stomach and heart in the right positions?” Both of these organs should be on the baby’s left-hand side.
- “Does the heart muscle work normally?” By 20 weeks, your baby’s heart should be developed enough to function normally.
We know that the effects of a CHD diagnosis can be traumatic and incredibly difficult to deal with, so we also wanted to share the story of a little boy who fought back. Continue reading below for Damon Hood’s story.
Damon Hood was born on at 7.36pm of Friday March 4th 2011. He was 10 days overdue. Labour started for his mum, Rebecca, that morning – a few hours before she had an induction booked in at Gold Coast Hospital. It was a complication-free first pregnancy for her – and after a straight-forward birth, Damon was 9lb 6oz and looked strong and healthy. They were discharged after 2 days and scheduled in to see their GP when Damon was 1 week old.
The words “good” and “perfect” were used by the doctor at this check-up. Rebecca and her husband, Tyler, were over the moon. That was until they were listening to Damon’s heart, and the doctor started looking concerned. He tried to concentrate and listen harder over Damon’s cries, and Rebecca knew something was wrong. Then the doctor said the words no parent wants to hear: “Damon has a heart murmur.” She flew into panic mode. He looked so perfect.
At 3 weeks old, Damon was looked at by a paediatrician at the Gold Coast Hospital. They assumed it was a Ventricular Septal Defect (VSD) – or a small hole in the heart. These holes usually close up on their own, but they were referred to a cardiologist just to make sure. Through the public system, the next cardiologist appointment was 5 months away, so a week later, the paediatrician did an echocardiogram (echo) to have a look and make sure (even though he wasn’t a cardiologist, he could diagnose a VSD).
The heart scan took place on April Fool’s Day. After the scan and a second opinion, the paediatrician told them that something was definitely abnormal. They called the Mater Hospital in Brisbane to confer with a paediatric cardiologist right away. After an oxygen saturations (SATS) reading of 70-75%, they were told to go straight to the Children’s Cardiology Outpatients Clinic at the Mater Children’s Hospital. Rebecca and Tyler were worried, but nothing had shown up on any ultrasounds, so it had to be mistake, right?
They were seen immediately after arriving. Damon had another echo and electrocardiogram (ECG), and the results were discussed by multiple, high-level doctors. After much looking, talking, and a lot of worry from his parents, Damon was diagnosed with a Tetralogy of Fallot (ToF) and a rare abnormal coronary artery anatomy. He needed open heart surgery (OHS) at 6 months old to repair it. Rebecca and Tyler was speechless.
Damon had Congenital Heart Disease (CHD). Rebecca hadn’t even hear of that, and no idea what any of it meant. Her first thought was “what did I do during my pregnancy to cause this?”. She’d made him, carried him – surely it was something she’d done. The doctors explained that it is a spontaneous and unfair thing that you can’t prevent from happening, nor do anything to cause to happen.
They were told to look out for Damon having “tet spells” caused by the blood flow to the lungs being reduced for a while. He would appear cyanotic, meaning blue, and he may then look grey, which is even more dangerous due to a lack of oxygen and requires an ambulance to be called.
Damon had 4 serious tet spells over the following few weeks and was in and out of hospital. His first OHS was brought forward to 11 weeks old where he had a 3.5mm BT Shunt put in. He was re-opened for his second OHS due to a blockage and a 4mm BT Shunt was put in. Damon suffered morphine withdrawals/addiction due to not being weaned off properly when in Paediatric Intensive Care Unit (PICU) and was given morphine daily in their extended Ward stay in order to be weaned off correctly.
The next 13 months were a feeding battle and Damon was nasogastric tube fed until he was 16 months old. At 14 months old, Damon had his third OSH for a ToF Repair, however not everything could be completely repaired. He now has a Right Bundle Branch Block (affects the electrical activity of his heart) and will require future surgeries. Looking at Damon today, you can’t guess his heart troubles. He is a bubbly, active, always smiling and dancing 2 year old, loves to eat, has an amazing imagination and is a proud big brother to Wyatt.Thanks to Heart Kids Queensland for this info and Damon’s story.