Some may wonder what it's like inside the hospital. What happens when a child is really sick. Many will have visited emergency for stitches or a cast, but some families know intimately more. We only lived the 'hospital life' for a few days on a few occasions, but our deep respect and admiration for not only the healthcare workers but the underlying system that supports us here in Australia, could not be greater. We will forever be thankful for the experience we had in the weeks and months before Sebby died, and particularly the final few days of his life. We got closure, we got a goodbye, in a kind environment, that many parents don't get to experience.
This is our sincere thank you to the teams of people who supported us.
07 September 2018
Dear Dr Brydon and colleagues
We write in thanks to your teams of people who have supported us recently. Our son Sebastian John Symonds passed away on 31 July at Sydney Children's Hospital in Randwick. He was ten-months old. While grieving through this difficult period, we have found a silver lining, in knowing that Sebby had the best care possible before he died.
We have met many parents at Sydney Children's hospital, from far and wide. And we can only imagine, that each will attest that the care their children have received is beyond exceptional. There is a beast that fires just below the surface. It's a throng of people who work tirelessly to keep the children of NSW healthy and safe. These people save lives, create futures and bring hope to families. Their value should never be underestimated, and we are thankful for their presence.
As the dust has settled, we have had time to reflect. It has taken some time to write this as it is an important part of our grieving. Though Sebby only required attention for four short months, we encountered an endless stream of your experts. We have chosen to call out the special people who have etched a small stitch on our hearts.
This is our eternal gratitude to the teams of doctors and nurses who helped not only Sebby, but us, through this wild ride. We wish for this message to be shared freely and widely, our story includes many, but our hope is that the wider network of doctors and nurses, even those we haven't met, know that their work truly matters.
We have requested that our friends and family donate to SCHF and NETS in Sebby's name and we hope these small tokens will help other families. Whilst our outcome was not one that any parent would welcome, we understand that not every life can be saved. But we sincerely tell you that our son was cared for like no other.
From the bottom of our broken hearts: Thank you. Thank you. Thank you.
Edwina & Ant Symonds
SPECIAL THANKS TO THE FOLLOWING TEAMS AND PEOPLE
· The paediatric team at Mona Vale, particularly our delightful paediatrician Dr Emily, who told us the very first time we saw Seb in distress to "not parent him any differently" because of the dire circumstances. We took her advice to heart and Seb had the most fulfilled, happy and relaxed life possible. He went out on a high. We now call Emily a friend and look forward to our future children being cared for by her. Dr Rob was also integral to our story, his calm nature under extreme pressure is impressive, to say the least. We particularly thank Rob for Seb's final visit to Mona Vale, he generously gave Seb his time and energy when he was not even on meant to be there.
· The Emergency department at Mona Vale Hospital, whom we have met four times in acute situations. Dr Andy, and his team including Justine and most recently Josh, take charge with little fanfare and the care machine that kicks quickly into action is impressive to watch. Dr Ratchford is again, a kind, calm and gentle presence, who allowed us to feel safe with our baby in his care.
· The nurses at Mona Vale paediatric ward who so dearly adored our Sebby. When parents are trapped in windowless wards, it can become quite soul-destroying. In Seb’s case, it was particularly boring as he so often looked and acted 100% well. The nurses kept us full with stories, laughs and hugs when we needed them. And above all, we trusted them implicitly with his care.
· The neurology team at Sydney Children's Hospital, particularly the ever-friendly, blunt and quirky Dr Ian. Whilst incredibly endearing, Ian's classic clinical bedside comments could often leave us petrified, but his persistence and tenacity in finding a solution for our Seb was evident during his final days. We don't think Ian slept a wink or ever does? His team of experts left no stone unturned and the research that they uncovered from across the globe must be applauded. He is an asset to the paediatric neurology field.
· The CICU nurses, to whom we are forever indebted. The dedication and passion these (mostly) women offer is unsurpassed. They not only offer the best care, but the support and love they show to the families is phenomenal. No ask is too small, no question goes unanswered. We specifically thank the nurses we had on our last visit: Becki, Shaz, Amy-Kate, Melanie– these women supported us through the worst days of our lives, showing the utmost care, and discreet professionalism. We asked Becki to speak at Seb's funeral, which she so beautifully did. During Seb's final night, she allowed us a moment of happiness by sharing with us the true beauty in organ donation. We are so proud our boy was able to be a part of this special group of lifesavers. (continued below)
· The CICU doctors at Sydney Children's hospital who work at an indefatigable pace. We asked Dr.Hari on Sunday when he sleeps, he shrugged softly and said "on my week off". This team were as shocked at Seb's rapid deterioration as we were, and they bent over backwards to search for a solution. Dr.· Hari provided positive support and made sure we didn't lose hope when the odds were against us. Hari, Jonathan, Jackie and the other doctors showed us such compassion. Their tireless dedication to all the patients in ICU has not gone unnoticed to us on each of our visits.
· The clinical genetics team, in particular Anne Turner. They discovered that Sebby had an extremely rare form of epilepsy, dangerous for its prolonged and uncontrolled seizures. After we were told Seb had not survived his seizure, it was critical that we knew if our new baby was free from this fatal flaw. The compassion, warmth and care from Anne and her team showed whilst arranging all the additional testing helped us through what could have been another traumatic experience. The team managed to put a rush on the results and informed us our baby is clear from HCN1 on the day before the funeral. This released a heavy burden from our shoulders and allowed us to offer Sebby our undivided attention and the send-off he deserved which was so important to us.
· The Neonatal Emergency Transport Service (NETS) or the "SAS of nurses and docs" as we refer to them. These teams swooped into four acute emergency situations and transported Seb safely from Mona Vale to Randwick. In his short life, Seb was lucky to fly in the Toll helicopter, so he got didn't miss out on all the perks! Their care and expertise on arrival each time was a huge comfort, us trusting completely in their specialised skills and knowledge. On more than one occasion they further stabilised Seb with their intimate knowledge before the transfer. We are in awe of them.
· The Ambulance crews, who are the life force in first-line care. Much to the chagrin of Dr Horsley, the first few times Seb had a seizure, we drove him to the hospital at a rapid pace. Many time's since we have had wonderful chats with friendly Ambos and heard the stories of the ridiculous reasons they actually get called out. As a parent, I am glad we finally got on board with calling them, as the support and care they provided Seb in those first critical moments was paramount. They are the most jolly, helpful people and we know they are a special bunch.
· A small silver lining in our loss was that Sebby was able to donate his kidneys to a worthy recipient. Jodi from the Donor Team was supremely supportive in our last two days with Seb, she kept us informed without intrusion, and we are thrilled to know that the recipient is doing well, we hope to personally meet them one day to tell them the story of our beautiful boy.
· Though we don't believe they are under your direction, we must also thank the Royal Women's consults – Rachel and Rebecca who have gone above and beyond (as have many at The Women's) working with our genetics team to ensure that any and all test have been done quickly and safely on our new baby. Their utmost efficiency and professionalism was calming to us during the turbulent few weeks after we lost Seb, as we were awaiting test results.
· Lastly to people unseen: the operations, administration and volunteer teams. Though we didn't meet these people we know that there is an enormous amount of integration and planning that must go into running a hospital. Those people are likely not ones that ever get called out, but we can honestly say, we never had an administrative issue or any annoying paperwork that got in our way. The removal of red tape (or at least the hiding it from families) is a true sign of their expertise and that of your organisation.
You must be so proud.
DONATE to Sydney Children's Hospital Randwick, you can put it in Sebby's name - we love getting little reminders that people are thinking of him always x