David's Backstory

In loving memory of
David Fazlollah Upeksa
04.03.11 - 19.03.11
David, our first child, was born as a normal delivery at term without any know complications (3.6kg/ 71bs140z). His Apgar score was 9 at 1 and 5 minutes. He had no problems in the first 24h, passing his baby check the morning after his birth with oxygen saturations (Sa02) of 98%. We all left hospital approx. 24 h after delivery and David was mostly asleep that day, not interested in feeding much but we didn't think much of it. He woke up as soon as we turned off the lights on his first night at home and had what I would assume to be a fairly normal 2nd night for a newborn with some crying and a little feeding, but lots of falling asleep on mum's chest, where he loved to be. In the middle of the night however, he woke with a loud, violent and inconsolable cry, which was unusual for him, and wouldn't feed. He then started grunting, which concerned us a little, but we thought we were just being anxious new parents. The grunting settled after 5-10 min and he fell asleep again. The following morning, the midwife came to visit us and we were trying to get him to feed well when he started the same violent crying following by grunting. The midwife was concerned and arranged for David to be assessed immediately by the paediatric team at
The James Cook University Hospital, Middlesbrough (JCUH). Of course, as soon as we arrived there he had settled, though the grunting lasted around 40-50 minutes this time. His Sa02 were initially around 50% but he didn't look cyanosed (blue) and they soon came up to mid 90's spontaneously and the early low reading were put down to cold hands and feet. The admitting paediatrician examined what seemed to be an essentially normal 2 day old baby by this stage and, while finding no significant abnormality suggested a few hours of observation. This turned out to be a good idea as 2-3 hours after his admission he had another violent cry and then became cyanosed. His Sa02 were in the mid 50's and didn't pick up with 100% 02. It was at this stage where I realised that there was something seriously wrong with David and the nightmare rollercoaster described by some many unfortunate parents before us began . He was whisked to the resus room and then PICU and started on Prostacyclin infusion as the team thought he had congenital heart disease with right-left shunting. He was intubated, ventilated, arterial and central lines were placed and he was transferred to The Freeman Hospital Newcastle for an echo and paediatric cardiology assessment. We were so relieved when he arrived safely and were then told that there was nothing wrong with his heart. We were told he had persistent pulmonary hypertension of the newborn (PPHN) and that it would resolve spontaneously in a few days with Nitric. The PICU Consultant told that there were other causes of this type of problem but that they were so remarkably rare that we needn't worry about them. David stabilised on Nitric he was transferred back to JCUH the following night. We were so pleased that he was coming closer to home and would soon be cured. However, the rollercoaster was only just setting off. The next day a Physician at JCUH was concerned about David's pulmonary artery pressures which didn't seem to be coming down and his blood pressure and oxygenation was difficult to control. We had that awful conversation that so many people on this site have had of being told he may have an untreated underlying condition. We were devastated. David was transferred back up to The Freeman Hospital for consideration of ECMO. For a 5th night in a row we were up all night as he was transferred back up to Newcastle. But again our anxieties were relieved to some extent when David was stabilised with some suction and surfactant and his Sa02 was miraculously 100% again. Our optimism declined over the next 2 days as he became unstable with frequent dips on Sa02 despite being on, by now, adrenaline, prostin, sildenafil, nitric, in addition to the sedation and paralysing drugs. In view of this he was put onto venous-venous ECMO, with our hopes at a low. However, this allowed us to hold him, see him looking stable, avoid anxious monitor-watching and go home for some sleep. His pulmonary artery pressures dropped and we thought that at last he was on the road to recovery. He came of ECMO easily, but again became unstable with high oxygen and nitric requirements. He thus had a chest CT scan which showed some non-specific ground glass changes, and then went on to have a lung biopsy. The night after the lung biopsy we hit rock bottom when he again had a severe dip in Sa02 and had to have ECMO restarted while we awaited the biopsy result. The surgeon who put in the ECMO cannulae (V-A this time) told us he had only needed to reinsert ECMO cannualae 6 times and none of the children had survived. The following day (24h after the biopsy) we were told the news we had been dreading, that the lung biopsy had confirmed that David had ACD. The following day, David's ECMO cannulae were removed, he was extubated and we held our beautiful 15 day-old son in our arms, as we'd been aching to do for so long, but this time it was as he died.

We love you David xx