Marcus’ Journey

It’s surprising how much more relaxing your second pregnancy is, with the exception of the frustration felt at not being able to eat chocolate as I had gestational diabetes! All went well during the pregnancy and Cameron’s little brother, Marcus, arrived exactly on his due date of 16 November 2011 at Campbelltown Hospital.

He did so well in the first few hours of life, until later the next day when he wouldn’t eat and began breathing too fast. He was quickly identified as having a heart problem and would require immediate transport to Children’s Hospital Westmead (CHW). So began the 6 month roller coaster journey of our lives.

Marcus spent his first month of life in the Grace Centre for Newborn Care where he was diagnosed with several heart conditions the major ones being; critical aortic stenosis, mitral regurgitation and left ventricular dysfunction. He would require various heart surgeries throughout his life however immediate action had to be taken to correct the aortic stenosis. At just 3 days old he was taken for a cardiac catheter, balloon dilation.

He appeared to do well after the balloon dilation, despite a collapsed lung and was slowly weaned off the ventilator and began feeding again. Finally we were able to go home just before Christmas! After only 3 days at home though he became unwell again and we spent the next 2 nights in Campbelltown Hospital until we were finally rushed back to the Grace unit at CHW.

It was then that we met Marcus’ surgeon, Dr David Winlaw who advised that Marcus would require open heart surgery to fix the aortic stenosis and he would require it the very next day! On 23 December we said goodbye to our baby boy, who was gone for over 7 hours and when he arrived back he was on ECMO and had a pacemaker.

For the whole 6 days on ECMO, Marcus was surrounded by a dedicated and supportive team of nurses and doctors who worked day and night to ensure that everything went as smoothly as possible to allow Marcus’ heart time to rest and recover. During this time though his kidneys failed and he had to go on dialysis for almost 2 weeks. On Christmas morning we were told not to get our hopes up, that there was little chance that Marcus would make it through.

After Marcus was successfully taken off ECMO, 2 days later he was back in theatre to have his chest closed and the pacing wires removed as the rhythm had returned to his heart. Very slowly he became a little better and he was extubated again and on c-pap. Shortly after this, the dialysis was ceased as his kidneys were functioning again.

By mid January we were moved to Edgar Stephan Ward where we stayed for 3 days and then had to be rushed back to the Paediatric Intensive Care Unit (PICU) and Marcus was intubated yet again.

Over the course of the next 4 months our roller coaster journey continued; Marcus was jaundice and had gall stones that were corrected by the insertion of a drain. During this time he couldn’t keep food down so he was taken back to theatre for a TP tube to be inserted along with a central line as the doctors could no longer get canulars in to Marcus. He would get better enough to return to the ward and then he would become sick again and rushed back to PICU.

Finally at the end of February, we were rushed back to PICU, this time the left ventricle of his heart was not functioning properly. Contact was made with Melbourne’s Children Hospital to seek advice about a heart transplant but the response was not positive. We were told that Marcus would not survive such an operation at his current age and weight. A new medication was started for Marcus and we just had to wait and hope that the medication would work.

Marcus remained intubated for the whole month of March and was successfully extubated on 1 April 2012 which was also his 100th day in PICU. He was placed on bi-pap and we spent the month of April in PICU, slowly weaning him down on his bi-pap so that he only required it for sleeping. The staff in PICU were fantastic and tried to help make things as normal as possible by letting us bath Marcus and take him for walks around the hospital and in the park when we could.

After 5 months, Marcus finally reached 5kgs and he was doing well enough to go back to the ward again. Over the next couple of weeks we began to feed him and change his medication routine so that we could get ready to go home. On the day that we were scheduled to go home Marcus got bronchiolitis and we spent the next week in the isolation ward!

On 24 May 2012 we finally came home. Marcus no longer needs the bi-pap and even though he still has 2 heart medications twice each day he is finally doing all the things that little boys get to do. Our little superman even turned 1 in November!

This has been the hardest hurdle our little family has yet to face however we would never have made it through without the endless support and dedication from our loving family, friends and dedicated teams at the CHW.

A special thank you to Heartkids who have been with us from the beginning of our journey and provided us with information, support, guidance and financial assistance. As a token of our appreciation, our family held a small fundraising event in Kiama, the ‘Zippa Dinna’ which raised over $11,000 for Heartkids! An incredibly dedicated organisation, thank you.

 

 

New South Wales