What happened to Zak was no one’s fault and could not have been predicted. He was never in distress at any point during my pregnancy, labour or even when I was pushing. It was not a case of me not pushing him out quick enough and he did not get stuck, the actual birth part that could be controlled was perfect. What happened is called meconium aspirate. This basically means that during its exit the baby poos whilst still inside you and swallows some. Normally there is signs of this as baby would be in distress or I would have had a funny colour discharge but there was never any indication. It wasn’t until he was out and on my tummy that we knew it had happened. I remember looking down at him once he was out and just seeing shit everywhere – he was covered from the neck down and it was all up my legs, there was just so much of it and he wasn’t crying. Its not uncommon for babies to poo on their exit but it is rare for Zak to have aspirated so much and reacted the way he did.
Parts of my labour and delivery are hazy and what followed is still a bit of a blur I am trying to recall and piece it all together – it’s fair to say I went in to a state of shock. All I really remember was the relief of feeling him come out, seeing them put him on my tummy, noticing how long he was, all the shit everywhere and then he was gone. He couldn’t have been on me for more than 30 seconds. I didn’t see them cut the cord or hear the emergency alarm or see the stream of staff rushing in because I was just exhausted. Then I looked over and saw what seemed like 20 people round him and I knew something was wrong and I just remember hearing Tom say over and over ‘let them do their jobs just focus on you, you still need to get your placenta out’ but I couldn’t concentrate on anything, I just wanted to hold my baby. Whilst the team were working on Zak in the corner Elaine removed my placenta and cleaned me up a little bit – once Zak was stable, they brought him over to the bed so I could see him and let Tom take a couple of pictures. They said he was needing a bit of help with his breathing and they needed to take him round to SCBU (Special Care Baby Unit) so they could continue to work on him then the doctor would come and update us. It wasn’t until after they had gone with Zak that I realised that meant he was on a ventilator. Now our room was nearly empty our baby was in SCBU, I was being stitched up and Tom was taking a quick power nap. That weird period of time seemed to last hours and I remember watching the sun come up whilst drinking a cup of tea with Tom snoring and me thinking it didn’t even feel like I had a baby.
The first doctor to come and see us was the on call paediatrician who had been working on Zak and although I don’t remember his exact wording he explained something along the lines of: ‘He is stable now, we are still helping him with his breathing but our main concern is the 11 minutes he was without oxygen and the damage that may have been done and protecting the brain from future damage. I would like him to have something called head cooling which is where we cool the body temperature significantly and this protects the brain from further damage. This would be done for 3 days. We can’t do that here so we would need to transfer him to another hospital and I have put a call into Bristol, as soon as I hear from them I will update you.’
Inevitably I was concerned this was my fault and that I hadn’t pushed him out quick enough but both the midwife and doctor assured me it was not my fault. At this stage I think Tom and I were both trying to be rational and were thinking ok so he just has to go to Bristol for a few days but he’s going to be totally ok. But equally I remember thinking this is what I thought it would be.
The next doctor who came in was from the NEST team (Newborn Emergency Stabilisation and Transport) from Bristol and when he sat down next to me, I knew it was serious. Again, I struggle to remember the exact wording, but some key phrasing stood out. He explained Zak was going to be transferred to Southmead hospital in Bristol for the head cooling as previously discussed. The difference with this doctor was he was a specialist and he did not hold back on the information he gave us and it was really tough to hear. He was concerned about the brain damage, he said Zak had suffered a couple of seizures and his brain waves showed some abnormality. When seizures occur, this means that neurons in the brain are dying or have died so there has been damage and what we are looking at long term are things like cerebral palsy and other disabilities. They were still working on him at the moment and putting some lines in his tummy but once they had finished, we could go round and see him and Tom would be able to travel with him in the ambulance if he wanted (I couldn’t as I was technically still a patient). Rather shockingly to me the doctor then said ‘I must highlight the risk of this transfer to you, he will be transferred in a specialist incubator in the ambulance and we will use blue lights and sirens but it is a 1hour transfer and there is a chance that he won’t survive the journey’. That right there was the sucker punch for me, I couldn’t believe what I was hearing – how could this happen?! He did reassure us that he thought the odds were in our favour and he would keep us updated. To me though it was more shocking hearing that he was going in an ambulance rather than he might have cerebral palsy, maybe because that was too far in the future to think about and I was trying to deal with the right here and now.
When he left the room its fair to say we both crumbled into floods of tears, it was like the rug had been tugged out from underneath us. How was our baby who was only a few hours old, fighting for his life and now potentially facing a lifetime of challenges? The staff were incredible and we were encouraged to call our parents for support who all came straight to the hospital and when they arrived staff made endless cups of tea and were there for whatever we needed. Understandably our parents were as distraught as we were and were desperate to support us anyway they could. Not long after they got to the hospital we went round to see Zak in SCBU, its one of the many images imprinted in my brain. He looked like a doll with all these tubes and wires all over him and he looked too little to be this poorly, but oddly he looked peaceful. I was encouraged to touch him but truth is I was terrified to. I didn’t want to hurt him or pull a wire out and I just couldn’t connect that he was my baby, it was all so surreal. I could feel the blood draining out of me and its fair to say I felt rather unsteady on my feet so I was relieved when I was promptly sat in a wheelchair and plied with more tea. It was then decided I would be admitted to Bristol as a patient for a few days myself and although at the time I felt this unnecessary at the time now I look back at the pictures from that morning I see it was wise – I look like a ghost, I look like I’m not in the room. I needed a couple of days of extra TLC and they had put me on antibiotics because they were concerned that the infection Zak had I may have too.
By lunchtime we were all in Bristol and Zak had made the smooth transition and settled in. The cooling that he was having was carried out in the form of a jacket around his body, he was kept at a low temperature for the next 3 days. Those 3 days seemed like 3 years – hours of sitting and looking at a motionless doll like baby in an incubator, surrounded by machines that alarm and beep constantly holding our breath and waiting. The NICU in Southmead is the best in the south west and the work they carry out is miraculous they save thousands of babies every year but that means they are very busy. The only way I can describe it was like an episode of casualty but a bit less dramatic. Zak was in ICU for the first 5 days and there were 7 other babies in there at the same time, not to mention the ones in HDU room opposite and SCBU next door. Doctors rounds would consist of about 15 doctors who would crowd round the incubators and talk about these tiny babies as if everything was perfectly normal. It was an alien world like a movie was happening around us and we were just stuck in the middle watching. There’s no escape once you are in NICU there is no access to fresh air or the outside, the blinds are permanently shut, the lights kept low and although visitors have to keep the noise down it was always so loud, with all those machines and beeps. I had a permanent headache for 4 days and found it hard to spend long periods of time in there. Whilst Tom wouldn’t leave Zak’s side and would often sit holding his hand until the early hours of the morning, I could only do half hour stints at a time. I felt like I was failing Zak and that he would know I was absent but I think in reality I still needed to recover. Tom was very strict with me and made me rest regularly and the nurses fed me up as much as they can (although my appetite was absent for a good few days). With majority of the babies in NICU all premature some weighing in at only 1 pound, Zak was a brute in comparison at 9 pound 4. This made it harder to understand as he shouldn’t be there, he was a full-term baby, a big baby, he shouldn’t be poorly. I think if your baby is born prematurely you know your baby will need help and have to go to SCBU but you just don’t expect it of full term babies.
By day 4 I was pretty much recovered from the birth but felt rather anxious as it was d day, today they were warming him back up and see how he reacted. Up till this point they were really happy with him the cooling was working he had no further negative brain activity but now they were warming him up there was the risk he could react badly. They did it slowly 0.5 degree every hour throughout the day so that if he did deteriorate, they could drop him back down. Thankfully he did brilliantly and he remained stable and even started to move his arms and legs and open his eyes a little. Over the next couple of days they slowly started to reduce his drugs as he had been on several different strong drugs to keep him calm and sedated whilst cold. Babies don’t like being cold it can be painful for them so they had to keep him topped up and knocked out to keep him comfortable but once warm again they shouldn’t need the drugs so they weaned him off and he did fantastic . So the next hurdle was removing the ventilator and ironically as desperate as I was for him to be tube and drug free I was terrified it would go wrong, I didn’t want them to take it out and it have to go back in. The doctors decided to wait 1 more night as he would show when he was ready to come off and within the hour of that conversation he decided to extubate himself and ripped the ventilator clean out as if to prove them wrong! He had a bit of top up oxygen and then they started to remove the other tubes and lines and our boy started to emerge from under it all.
Day 5 was the most memorable day, the day we got to hold him. I had kept it together pretty much to this point and although couldn’t shift the headache and was obviously quieter than normal I hadn’t broken down. But the minute he was placed in my arms the tears rolled and I was a blubbering mess. Just thinking about it now brings it all back and it’s a feeling I’ll never forget – here he was finally my baby and he was making such great progress. During the rest of that day they removed all his lines, we could dress him and change his nappy and he came out of his incubator and into a normal cot. They started to feed him through a tube in his nose with the colostrum I was expressing and topping up with formula. The next night he moved into SCBU next door and now he really was our baby, we could pick him up whenever we wanted, change his nappy, feed him and care for him as normal. Now all we had to do was crack oral feeding and for him to have an MRI to assess if there was any brain damage.
After a few days we had not made much progress with feeding Zak couldn’t get his head around breast feeding and the doctors didn’t want us to push too hard as he was still coming off the drugs and it literally takes days for them to get out of his system, he needed more time to try and figure it out especially as it had taken so long for my milk to come in. So, it was decided after his MRI we would transfer back to Swindon hospital for a little more assistance with feeding. On the Monday they carried out his MRI and it was a strange day because it was like we went backwards a bit – he had to be sedated for the scan, so he was drowsy all day and the drugs knocked him out so much he had to go back on a low level of oxygen. Although the MRI was necessary it was horrible to see him all drugged up again and with tube back in.
We got the MRI results the following morning and unfortunately it showed that there was some brain damage. As previously thought the MRI showed what happened to Zak was a short sudden incident that could not have been predicted or prevented and ultimately the injury to the brain was caused by the lack of oxygen Zak endured for those first 11 minutes after birth. The MRI showed the 2 areas of the brain affected were in the centre of the brain and were movement and decision making - but they could not say how the injury would affect him. When it comes to movement injuries there is a broad spectrum, and this can range from Cerebral Palsy to stiff muscles where he would just need physio. It could be that he just takes longer to learn things like crawling and walking. Movement can also affect the throat in terms of sucking swallowing and vocal chords. So speech is something that might be affected and we then wondered if that was why he was struggling with getting the hang of feeding because he couldn’t swallow or suck properly. They did reassure us though he might just need a couple more days for the feeding because he had been through a lot. The doctors were concerned this was awful news to give us as they could not definitely say if or how Zak will be affected in the future so it’s a waiting and watching game which can be stressful. Tom and I both agreed though we expected the MRI to show brain damage, there was no way the doctors would have acted the way they did and treated Zak the way they did if they didn’t think he was seriously ill. On initial admittance to the ICU, despite being the biggest and only full term baby in there (by a long shot) he was one of the sickest. What we discussed with the doctors was hard to hear and I hate the thought that Zak may face more medical challenges (I think we better get used to hospitals) it does not change the love we have for him. The doctors explained the majority of his follow up care will be at Swindon but he may have to go back to Bristol for MRI’s if required. He will be closely monitored for the next couple of years to see if he reaches the milestones he needs to. Right now the priority was feeding, we all wanted to get him orally feeding if possible before being discharged but worst case scenario he could go home tube feeding.
Once back in Swindon we spent a few days trying to crack feeding by using nipple shields and although he cracked the sucking and swallowing element and would now take bottles, he still hated the boob and it was becoming rather stressful for both me and him as it would result in him screaming the roof off the building every 3 hours. So we decided to stick with bottles and I just expressed my milk and what I don’t have enough of he has top ups in formula. This meant that from the minute he got back to GWH he never had a tube feed – we had cracked oral feeding! He also came off his antibiotics as his infection had cleared up and he was off oxygen he suddenly became a normal baby and by heck did he find his lungs! Tom had said in Bristol all he wanted was to hear him cry because even the premature babies were screaming but Zak was so poorly and drugged up he didn’t cry, once he started though he made up for lost time!
When we were finally discharged on day 16 it was the strangest most exciting feeling. The whole 2 weeks had felt so surreal as we watched and waited rather impatiently at times. Those 15 days felt like 15 weeks, I can’t even imagine how couples with premature babies who are admitted for months on end survive the stress! Zak has come so far and overcome so many hurdles already and even now we are home he continues to prove us all wrong. At not even 6 weeks old he is holding his head up, standing up on us and is showing such strength at times it feels like he is fighting me. He has proved he is a fighter and we will just continue to take each day as it comes as that was all we could do since he arrived, we are just glad to have him.
We cannot thank the teams in both Swindon & Bristol enough, without them, their quick actions and continued efforts we would not have our little boy here with us today. The care we received throughout not just of Zak but also of both Tom and I with accommodation provided we never spent a night apart from Zak and they supported us through everything. NICU and SCBU are 2 departments most people know exist but never give much thought to and I was no different but these teams are miracle workers and we will forever be in their debt, I have never been more appreciative of the NHS.
It takes time to get over what we have been through and I think that only now we are out of the situation I can start to process it all. When you are in the middle of it you just carry on because you have to, Zak needed us. All the time in the first few weeks people would say I can’t believe what you have been through and the trauma you have lived through – now I can start to see that what happened was traumatic and we are allowed to struggle a little. The nurses, midwifes and health workers have me on close watch for Post Natal Depression as I am at increased risk of it but I think I am fortunate enough to have a huge support network that I can talk to and the more I talk the more I get my head round it all. A specialist team will now launch an official investigation into Zaks birth and care to ensure nothing could have been prevented and that he received the most appropriate care. They will interview every staff member involved in his delivery as well as me and they will issue a full report debrief. They may suggest that for any future pregnancies they make some adjustments to avoid anything like this happening again, particularly as I seem to be able to carry and deliver very large babies quite comfortably. GWH have already carried out an internal investigation and concluded nothing was amiss and could not have been prevented. I have no doubt that the care we received was the best but they also like to learn from everything so this investigation will hopefully give us all some answers.
Life never stops surprising me – I can’t believe just over a year ago we were told we wouldn’t be able to conceive naturally and I thought that would be the hardest thing we went through. When we got pregnant and my pregnancy went so well I never even considered the possibility our baby might be poorly and so poorly we would spend weeks in hospital. Zak already felt like our miracle baby whilst I was pregnant but to then nearly lose him just makes us appreciate him so much more. I don’t know why it happened but I think everything happens for a reason and what doesn’t kill us makes us stronger, we just hug Zak a little tighter!