Xavi’s Story

The Birth – 24/06/2014
On a stormy Mornington evening, Xavi Matija van der Ende was born at 38.5 weeks at 5.36pm weighing 3540 grams (7.8lb). At the time he was known as baby boy Selzer (mum & dad hadn’t agreed on a name yet). Born via emergency C-section due to Oligohydramnios (a condition in pregnancy characterised by a deficiency of amniotic fluid), Xavi was born in a small private hospital in Mornington, Victoria.

Once born, he was quite blue, very floppy and his oxygen sats were poor along with low APGAR scores. The attending paediatrician suspected ‘Transposition of the Great Arteries’ (TGA) and rushed him to the hospital’s special care nursery. There he was intubated for oxygen therapy. While the oxygen helped, this hospital had a low care/low risk maternity ward that was not equipped to deal with complex conditions like this.

Soon after NETS (The Newborn & paediatric Emergency Transport Service) were called to organise a transfer to The Royal Children’s Hospital and the drug Prostin (prostaglandin) was rushed to Mornington from a local public hospital as it was not stocked on site. The Prostin was administered to help prevent the Ductus Arteriosus (a fetal blood vessel that connects the left pulmonary artery with the descending aorta and that normally closes at birth) from closing. The paediatrician, along with her team worked tirelessly to keep Xavi alive until NETS arrived and readied him for transport to the RCH.

Xavi left Mornington in an ambulance with two paramedics at approximately 9.30pm, 3 hours after coming into the world. Mum said goodbye from a hospital stretcher before he was rushed out of sight.

First Night at RCH
On arrival at RCH Xavi’s oxygen levels were at a poor level of 40-50%. An echocardiogram soon confirmed the diagnosis was ‘Transposition of the Great Arteries with intact ventricular septum’. Meanwhile, whilst his mother had to remain in Mornington, his father, who had followed the ambulance to the hospital, was attempting to navigate the Children’s Hospital and find out what was going on.

The Prostin therapy had proven ineffective and Xavi’s condition deteriorated rapidly. His oxygen levels had now fallen well below 30%.

An emergency Balloon Atrial Septostomy (BAS) was performed. If successful, this balloon would keep the Ductus Arteriosus open, promoting the mixture of blood and oxygen his life required. The operation was attempted through the right side of the groin…It failed. Next attempt was through the left side of the groin…This again, also failed. Desperate, the cardiologist tried one last time through the umbilicus…And it was a success! The duct in his tiny heart opened and blood mixed with oxygen. The blood oxygen levels immediately jumped to the 70’s. At last he was stable. Oxygen levels at this stage could not reach 100% until the arteries were switched back to their normal position.

At approximately 5am Xavi’s father was admitted to the room in the RCH PICU ward where Xavi lay on a tiny bed covered head to foot in tubes.

The RCH Journey
While Xavi lay in his tiny bed in Parkville, mum lay in her own bed in Mornington, about 80km away, clutching the white, size four-zero jumpsuit he was supposed to have been wearing. Listening to all the other babies on the ward, she was alone, devastated and worried beyond belief. In the morning the nurses quickly realised she was going to the Children’s that day one way or another – even if she had to walk there in her hospital gown. They organised a packed lunch, wheelchair and pain medication for the C-section wound and helped her into a waiting car which took her across to Parkville. Here the family was reunited and mum and dad were together able to decide on a name for their beautiful son.

Xavi’s balloon therapy was no more than a band aid and the hospital staff explained the lifesaving operation he required. Open heart surgery. The surgeon needed to cut open the baby’s chest and switch the aorta and pulmonary arteries back to where they should be. This required a heart bypass and the family was advised the operation can take anywhere up to 8 hours. In the meantime however they had to wait. Upcoming surgeries at the RCH are triaged daily and with Xavi now in a stable condition his surgery was placed in the queue. After a couple of days in the PICU ward he was released to the Cardiac ward to continue building strength and to await surgery. Feeding was initiated and he enjoyed his first meal through a syringe, but quickly deteriorated again with continued feeds. Two MET calls to his room were placed within a couple of hours and he was moved back to intensive care. The next few days were extremely tense. The doctors were worried he may have had Necrotising Enterocolitis (NEC), a serious condition that would have left him unable to undergo the heart operation. He was also thought to have had Coarctation of the Aorta, which would require an additional surgical correction while in theatre. It was touch and go every minute of every day with no-one knowing on a day to day basis whether the operation would be done that day, or even at all. Finally, day 7, the 1st of July Xavi was cleared of these concerns and was able to have his operation. The whole process, which lasted 5 hours including approximately 2 hours on the heart bypass machines, was a complete success.

Xavi survived and recovered remarkably well. He learned to breast feed, learned to cry (crying had been restricted due to the tubes down his throat on his vocal cords) and mum and dad learnt what it meant to be parents of a newborn. The family was home in just 11 days post op, completely in love and proud as punch of Xavi, their little heart warrior.

Post Hospital
13. Xavi IMG_8326
It’s been quite difficult to deal with knowing Xavi’s condition wasn’t picked up during the 18-20 week fetal anomaly scan as it generally can be. Had we been prepared he would have been born at the Royal Women’s or another near-by equipped hospital.

Xavi is now 11 months old and while a beautiful, fun loving child, his development requires continuous follow ups and he is currently being treated through Early Childhood Intervention Services. He is going really well and everyone is happy with his current progress. We hope for his sake this pattern never breaks.

Meanwhile in reflection, we really have had an amazing and positive outcome. And, it is easy to think of all what ifs and buts, however we do appreciate that we’re very fortunate to have the medical care that was provided and is available to us today.

We are extremely grateful and forever thankful for everything everyone has done for us during this trying time, in particular, the staff at The Royal Children’s Hospital. Special mentions to A/Prof Andrew Davis (cardiologist), A/Prof Christian Brizard (surgeon), Dr Ylva Andersson (paediatrician), Dr Jolyon Ford (the obstetrician). And of course, the ongoing support from HeartKids.

Written by Xavi’s parents, Maxine & Matthew

Victoria & Tasmania