· the hope that grows in parents planning their family;
· the hope that blossoms when that first test is positive;
· the hope that steels itself when the world is turned upside down;
· the hope that holds on through the darkest times;
· the hope that may one day re-emerge and grow again.
Pippa was a planned child – someone to be a playmate, friend and side-kick for Trigby. The positive pregnancy test was more than happy news. It was the end of long months of drug cycles and hormonal tempests. We knew the pregnancy would be tough – Erin's body does not take kindly to visitors – but our experience with Trigby had shown us that the months of debilitating illness Erin would experience could be soon left behind with the new arrival.
A routine scan at 13 weeks brought everything crashing down around us. There was a defect in the baby's heart – an exact diagnosis was impossible, but it looked like Hypoplastic Left Heart Syndrome. Would the baby survive? Would the baby even get to term? What should we do? We did not know. Dr Vijay Roach guided us though this period with the wisdom and compassion we needed. Under his care we came to face the reality that our baby would be different.
Vijay sent us to cardiologist Dr Gary Sholler at the Children's Hospital Westmead. It was a long six weeks before the baby developed enough for Gary to get the view he needed to confirm the diagnosis in the 19 week scan. It was HLHS. Poor Gary bore the brunt of Erin's withering cross examination, as the pages of closely typed questions emerged. Gary's patience and understanding were remarkable and we will always be grateful to him for his care. He explained the HLHS did not need to be a death sentence. It could be treated. It would be a long and difficult process, but there was hope – hope for our baby to lead a life not too dissimilar from any other child.
Gary sent us to Dr David Winlaw, the surgeon who would operate on the baby. By now we knew we were having a little girl and we were tired of hearing about "the foetus". Our little girl would be Philippa to the world, but Pippa to us. David explained to us that the HLHS defect, which had been fatal until the mid-80s now had survival rates of about 80%. By the age of five, HLHS children were going to school, playing in the playground and leading 'normal lives'. Children born with HLHS in the late '80s were now having children of their own. There was hope for Pippa.
Erin came under the care of Dr Neil Athayde, who would handle the delivery. Pippa came under the care of a large team of doctors, nurses and technicians led by Doctors Sholler and Winlaw. Hopes were high. Plans were made.
But things don't always go according to plan.
At about 30 weeks, during a now-routine monitoring scan, Dr Sholler detected a second anomaly – Intact Atrial Septum. Pippa's already compromised circulation was being impeded by a valve that wasn't supposed to close until after birth. This defect would cause damage to the heart and to the lungs during the remainder of the pregnancy – damage that could not be stopped or accurately measured. We would not know how bad it was until she was born. We heard the phrase "not uniformly fatal". We were told that the odds had basically been cut in half.
But half of good leaves room for hope.
The last weeks of the pregnancy were not easy. It is hard to prepare yourself for the unknown, especially where the best case scenario is frightening in itself.
Many of you will have read Pippa's blog as the events unfolded. We chose to put her story there for all to see, so that those who wanted to could understand what she was going through. It was also our link to the outside world during a dark and difficult time. The messages we received from you helped us, hour by hour, to maintain our hope.
The medical and surgical team led by Dr Winlaw at the Children's Hospital are the most dedicated and inspiring people we have ever met. We are eternally grateful for everything they did for Pippa.
Pippa lived for 6 days, 5 hours and about 25 minutes – about 149½ hours in all. It is hard to come to terms with a life on that scale. What can you do in 149½ hours? It's perhaps longer than you think. You could watch the Lords of the Rings film trilogy and every episode of M*A*S*H, re-live every Melbourne Cup race and listen to the entire Beatles catalogue and you would still have a little time to spare. Pippa didn't do any of those things but she did give us a lifetime of memories – her lifetime – and those memories run the gamut of emotions.
Pippa tried as hard as she could to stay with us but she just couldn't. We have to let her go, with the hope that her short life and the lessons that can be learned from her might help those that follow.
She is not the only one who is heartbroken.
