Bit of a different blog post – this is the talk we presented at the Neonatal Transport congress (international conference for medical professionals who work in neonatal emergency transport) last week in Oxford. We had Alec with us and passed him between us we spoke, swapping the microphone for an 18 month old!
This is Alec. Alec was born on 5th March 2016 in Peterborough weighing 714 grams. He was 23 plus 5 weeks gestation. We have an an older boy called Evan who was born at lunchtime on his due date, so this was a big shock! We’ve been asked to talk about Alec’s four trips in a neonatal ambulance between Peterborough and Addenbrooke’s hospital in Cambridgeshire with ANTS. As a family we are the proud owners of two STAN bears, something our three year old was very proud of his brother obtaining for him. We are planning to talk through our four very different transfers and use some extracts from a diary that we kept during our hospital stay.
Susannah was admitted to hospital a couple of days before with a few complications during the week. It looked possible but unlikely that the baby would be born so plans were made to transfer her to Addenbrooke’s should the baby arrive. However we didn’t get that far!
Trip 1: It was a traumatic, quick and unexpected delivery. After lengthy resuscitation attempts we were told Alec was not alive. As the doctor turned from telling us this his team behind him announced that they had a heart beat and he was whisked off. We waited in an empty delivery room. Our midwife went to find out how Alec was doing during this time and we found out that he’d tried to cry. This sounded hopeful! Then a consultant came to see us and explained that on examination he felt that Alec may not even be 23 weeks yet, mainly due to his fused eyes. He painted a picture of a slim chance of survival, and if he did, with significant disability. He wasn’t sure that Addenbrooke’s would be able to accept caring for Alec and said that it would be up to them.
The next news we heard, ANTS were on their way! We had no idea that baby ambulances even existed. The first time we saw our son he was 3 hours old and ANTS had arrived and were getting him ready for transfer.
I wrote in our diary… “They were amazing, the most personable people. My confidence grew with them. They spoke to Alec by name as they did things. The thing that stuck in my mind was the doctor saying something like: ‘I don’t go for gestation, I have seen statistics and different results. I have done checks on your baby and he has responded well. That is what matters.’ But he also said: ‘Although if what I have said is too positive I don’t mean it to be, but what I am saying is fact. I have tried tests on your baby and so far he is responding well.’ I felt so much better. The stats were against him but there was a glimmer of hope. He was fighting!”
We made the decision not to travel with Alec. Susannah was obviously unable to and we felt it was important for me to tell our eldest son that he had a little brother. I asked the driver and he confirmed that they’d be travelling on blues. This was a big deal to me as a police driver myself. It was another moment of realising how serious it was. I remember the careful drive home from hospital after our first boy was born, probably the slowest I have ever driven, with something so small and delicate in the back. Now my second son was being driven as an emergency on his own by a stranger.
When I think of this moment again, one of my most difficult decisions was whether to travel with Alec or not. I think in those early hours I could see the gravity of how poorly Alec was but also had a sense of trust and confidence as we watched the professionalism and care of the travelling doctor and nurse. Without any previous knowledge of these type of ambulances, as I watched ANTS work I felt like it was the experts arriving and taking control which bough me huge confidence – not taking anything away from the amazing work that the Peterborough team did. It was just that we knew that the arrival of ANTS meant that Alec was being given a chance. Also that they were the experts in getting him to where he needed to be.
To give a picture of what Alec went through prior to coming home to us, here’s some of the main headlines of our NICU stay: He spent most of the first six weeks ventilated, at one point oscillated on 100% oxygen. During the first few weeks, his lungs collapsed a few times and were seriously damaged. He required treatment for a PDA and suffered from renal failure from antibiotics. On his first night he had a grade IV brain bleed. At four weeks old, after a week on CPAP, his bowel spontaneously perforated and he was rushed for surgery, which left him with a stoma which was subsequently reversed. He had laser eye surgery on both eyes, had a Hickman line fitted and during his time in hospital, needed 27 blood transfusions.
These were the medical events, but we chose to keep some milestones of our own, which we wrote in the first week, and dated when he achieved them. They were: having my milk, holding him, seeing his eyes, breastfeeding, wearing clothes, breathing for himself, Evan to hold him, read him his Bible story book, move to Peterborough. We suddenly realised that the only milestone left to achieve was returning to Peterborough, and it was the week of his due date. So he’d achieved them all before he should have even been here! Throughout the week, we knew from the doctors that Peterborough was the aim. It was starting to look like he might turn up at Peterborough Hospital on the day he was actually meant to! It felt really special that all the things we’d hoped for, he was going to achieve before he should have even arrived.
Trip 2: We’d been around the NICU long enough and seen friends come and go, to know that there can be a lot of waiting around and uncertainty with non-urgent transfers. In this case, it ended up not being the fairytale due date return that we’d hoped for, as Peterborough NICU didn’t have a bed until the following day. That day was spent waiting around to hear if they’d got a bed, which during the afternoon, we found out that they did. I was told Alec would be transferred overnight.
I wrote: “I decided to stay and go on the Ambulance with him. Even if it meant being up all night. I knew it was bonkers but I needed to do it…. The bed was confirmed. ANTS were on their way.” I had never been in an ambulance before and so genuinely found it a little bit exciting! I sat in the back with the nurse and Alec. Having been in hospital for so long I had an understanding of what the numbers on the monitors meant. The SATs etc were looking good and it was an uneventful journey, but really nice to travel with him. I felt a bit emotional leaving Addenbrooke’s as we’d been there so long, but this was a significant move in the right direction for Alec getting better. Also life was going to be a lot easier walking to hospital instead of living apart from family or driving on the motorway every day.
We arrived in Peterborough at 11pm. I was excited about returning, a 23 weeker that they’d resuscitated, arriving back. In my head it was a big deal for both us and Peterborough NICU. In reality it was business as usual! I know it’s not about milestones but I remember it feeling a bit of an anti climax arriving so late at night, a day later than I’d hoped and then having to leave Alec in the middle of the night with people who didn’t know him.
Trip 3: We were expecting a third journey back to Addenbrooke’s for Alec’s stoma closure surgery. About 10 days before this, we’d spent the morning with him and were with friends in the afternoon when we received a call from Peterborough NICU, saying that ANTS were on their way to get him, because the surgeons had recalled him due to a nasty looking infection on his stoma site. As we arrived at the hospital we were told ANTS had been diverted to a 23 weeker in Watford but a night crew would come. We of all people recognised the need for a 23 weeker to be a priority!
We wrote: “We were worried as they kept on referring to him as stable. But we didn’t know what was happening and we didn’t want him to become an emergency. We’ve had horrendous moments and some that have been fine after we’ve worried about them. Either he needs to be seen urgently or he doesn’t.”
We decided to go home and meet Alec in Cambridge in the morning. We were called a couple of times in the night, saying an ambulance was on its way, and called again twice more to say they’d been diverted again. We didn’t know if he’d need surgery urgently when he got there or not. This was very difficult to take, we’d been used to through the majority of our stay in hospital Alec being or feeling like one of the sickest. Recognising that there were limited resources and other emergencies going on around but it was difficult to take when Alec needed something and it wasn’t able to happen immediately, as we thought he needed.
The same doctor who took him the day he was born arrived at 11:30am the next morning for his return journey. Susannah travelled in the ambulance. After 4 months in NICU and having seen Alec extremely poorly, we could see that this was a different kind of urgent. We recognise that ambulances were being diverted to those types of emergencies, however it was still really difficult.
Trip 4: Our two non-urgent transfers could not have been more different to each other! Just over a week post stoma closure surgery Alec had got up to full feeds for the first time ever. I went in on the train because of traffic issues and totally unexpectedly, returned by ambulance! At the doctors rounds it was said that they’d contact Peterborough paediatric ward for a return in the next few days. As it happened, there was a bed available that day, so it was referred to ANTS.
I left the ward to get some food knowing that at some point later on, maybe overnight, we’d be travelling back. I knew I could be waiting a while! I was eating my lunch and a nurse arrived to say that ANTS were on the ward collecting Alec! As I got there he was being loaded up ready to go. We left in a big rush, the total opposite to Trip 2, with all the waiting around.
When we got to Peterborough Sam and Evan were waiting for us, the team allowed Evan onto the ambulance to have a look round. Within 3 hours of hearing that Peterborough had a bed, the four of us were alone together for the first time, in a side room of the paediatric ward. Brilliant but a huge shock.
The ANTS doctor warned us about how the wards would be different but when she said I didn’t realise how much. We can honestly say that going from high dependency on a NICU to a side room on a general paediatric ward was the most difficult part of our whole hospital stay, with the exception of the very early weeks when Alec was so poorly. It was a very sudden change in ratios, monitoring, and just felt very different the environment in Addenbrooke’s that had become very familiar. I appreciate how the doctor had tried to prepare us for this.
Alec eventually got home on August 9th 2016. We are under no illusion that the existence of a dedicated neonatal transport service has saved our son’s life. Our four journeys could not have been more different, yet there was a consistency in the way in which we could interact with the doctor and nurse, which gave us real confidence in them transporting our baby. We wanted to share this experience with you today because we will always want to support ANTS and the amazing and vital work that they and you all do. Every so often we’re travelling and see an ANTS ambulance pass us. Wed never noticed them before! Now we have a bit of a shudder, knowing that inside there’s a very sick baby, a worried parent and a doctor and nurse working hard to care for them. and then comes a sense of gratitude and pride, gratitude for how Alec was cared for and pride for how far he has come.
I was in Andrew Berry’s talk this morning and heard the list of things that you all look at with deciding to prioritise whether to come. Gestation, weight, condition at birth, gender. We had been told these things before but gearing the talk reiterated it. Alec basically failed on all but his birth weight – quite hefty for 23 weeks! We really know how fortunate we are that a team even came to get him, for that we’ll be forever grateful.
Alec was given a 10% chance of survival and today he’s absolutely full of life. Alec is a happy smiley boy and on the whole really healthy, breastfeeding and eating almost anything he’s given, along with throwing bits on the floor he doesn’t want. He adores his big brother and it looks like they’ll be the best of friends. Alec will have some difficulties to face long term (like moderate deafness and likely cerebral palsy), but we know he’s strong enough to overcome them.