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15 November 2018

Fundraising for Noah’s Ark Children’s Hospital for Wales

Fundraising for Noah’s Ark Children’s Hospital for Wales
Over the next year we will be fundraising for Noah’s Ark Children’s Hospital for Wales’ Tiny Lives Appeal.

The hospital’s amazing medical team care for poorly babies and help them and their parents through very challenging times. The appeal was set up two years ago to raise £1 million for the neonatal intensive care unit at the University Hospital of Wales. It aims to raise money for emotional support services for parents going through an incredibly tough time, and lifesaving equipment to give premature and critically ill babies the best chance. The service will also provide support to those nurses and doctors who give their all in caring for their tiny patients.

This year the team at Noah’s Ark saved the life of baby Theo who was born when his mum Hayley, our Policy and Programmes Manager, was just 26 weeks pregnant. Due to this, the appeal is very close to our hearts.

Theo’s story below has been written by Noah’s Ark.

We first met baby Theo on Island Ward at the Noah’s, Ark Children’s Hospital for Wales. His mum and dad Hayley and Mark thought it’s a great place but, like any parents, they were very much hoping that Theo won’t be there for long. But Mark and Hayley had a bigger reason than most to want to take their baby home. Because it’s a place where, up until very recently and despite being more than half a year old, he’d never been.

Theo’s doing really well now but there have been times since he was born back in March, when Hayley and Mark where facing the very real prospect that they may never leave the intensive care unit yet along the hospital with their baby.

Theo was due date was the 20th of June so when Hayley woke up with pains on a snowy morning in March, it didn’t even occur to her that she could be in labour. At only 26 weeks pregnant, Hayley admits that she hadn’t even known it was possible to have a baby that soon.

After a few hours, the pain wasn’t going away, and as they seemed to be coming and going regularly like contractions, Hayley and Mark decided to get checked at the hospital. Hayley knew that something wasn’t quite right, but none of the medical team mentioned the possibility that this could be labour, and reassured Hayley that these were probably normal pregnancy pains and that she would probably be able to go home in the early evening. At 5:15 that evening, whilst still on the ward, Hayley felt a sensation she describes as a massive explosion as her waters burst. The ward staff injected Hayley with the steroids usually given to a woman in premature labour to protect the baby’s lungs and brain, but it was too late. Theo was born 20 minutes later, more than 13 weeks early and weighing a tiny 880g.

Hayley says: “I was in complete shock for those first few minutes and absolutely convinced that Theo wouldn’t be alive. I hadn’t been pregnant for long enough to go to classes or learn much about giving birth and what to expect after having a baby and there had been no time for any of the neonatal team to come and talk to us. All I had to go on were the episodes of One Born Every Minute I’d watched and from that I knew that babies usually cry when they come out. When he did give out a little cry, it gave me hope. I could only see him briefly before they took him away and I remember feeling terrified at what lay ahead of him. The thought of him feeling pain and discomfort and being apart from us was awful.”

“We were allowed to go and see Theo on the neonatal unit a few hours later and even though I was still in shock and distraught at the situation, I can remember thinking when we walked in how incredible the place was. I had no idea that this place existed and I just couldn’t believe how big and modern it was, and that all this amazing technology and staff were all here keeping these poorly babies alive. I didn’t think babies born that early stood a chance.

I can remember thinking that Theo looked more like a foetus than a baby when we first saw him. His skin was red and he was about the length of my forearm. His eyes were still fused shut. The nurse talked us through all the lines that were going into him and monitoring him. At this point nobody had given us any information about his chances of survival, and so we clung onto hope that there was a chance. The nurse told us that he was one of the first babies to use the brand new incubators called Baby Leo and that we could choose the colour of the light inside if we wanted to. I know it might sound silly but, as it turned out, something as small as changing the colour of the lights and having his name on the screen was the closest we got to choosing an outfit for him for a really long time.

Hayley and Mark were told that Theo’s condition was stable and to go to get some rest. Hayley remembers them both crying together all night as the gravity of the situation hit them. She says: “I just felt so guilty. I kept thinking that it was my fault and that I must have done something wrong. I kept apologising to Mark that I hadn’t been able to keep Theo safe where he should have been. I felt like I’d failed them both.”

Theo’s condition remained stable for a few days and he started to open his eyes and move a little more. On the fourth day the medical team tried Theo on a slightly less invasive form of breathing support called BiPAP. But after only a few hours he began to struggle and he was put back on the ventilator. On the same day, Hayley and Mark were given the devastating news that a bleed on Theo’s brain which had originally been classed as low risk, was in fact a level four – the most severe grade bleed possible. They were given the devastating news that if Theo did survive, it would be very likely that he would develop some form of disability. Over the weeks they would closely monitor the bleed to see if caused any swelling which would require immediate brain surgery.

But as the hours progressed, it was Theo’s lungs that had become the biggest cause of concern. Theo’s oxygen dependency increased rapidly until not even the ventilator could support his needs anymore. The only option was to transfer Theo to an oscillator - a high frequency form of ventilation that keeps the lungs permanently open. But despite receiving 100% oxygen, the levels in his blood struggled to stay at 90.

Hayley says: “The oscillator is terrifying. It makes a horrible noise and because you have to be completely paralysed before going on it, Theo looked unnaturally still. The doctors told us that they were extremely worried and because Theo wasn’t improving with even the highest possible type of support, the only option left was to try steroids. Most babies born early are given the best chance of survival through being given steroids and other drugs before delivery, to help the foetus mature, but Theo didn’t have any of these in time. The neonatal team explained that Theo was struggling because he wasn’t given these drugs in time. This was very frustrating for us and we were so grateful for the Neonatal team for trying everything they could in a very difficult situation. We are eternally grateful for the amazing care they gave Theo and us during his stay on the unit.”

Thankfully the new course of steroids started to work and over the next week, Theo moved back down to the ventilator and then back on to BiPaP.

On the 16th day Hayley was hold her son for the very first time and Mark had his first cwtch the following day. They felt excited and hopeful that perhaps things had turned a corner. But their hope was short lived. As Mark was still holding him all Theo’s alarms went off and his levels plummeted.

Mark said: “Don’t panic unless we panic is a common phrase used on the intensive care unit and it’s usually reassuring. But on that day, we all panicked. The whole crash team were there in seconds to intubate Theo and put him back on the ventilator again, it was clear how shaken up Theo’s nurse had been. She said that his little body had given everything in those few moments to stay alive.”

Over the next few hours Theo’s condition, despite the ventilator and steroids, continued to deteriorate. The only option left was a stronger steroid, but this carried a potential risk of further brain damage.

Mark says: “We were basically being given two options – a high risk of long term disability or death. For us, we just wanted our son to be alive; we could deal with anything else. He was showing so much fight and determination to be here so we had to support the neonatal team in doing everything they could. If he wasn’t giving up, neither were we.”

Theo was started on the new course of steroids soon after but by this point he had been placed back on the oscillator on 100% oxygen. Despite this the levels in his blood were still dangerously low. At this point Hayley and Mark were told that there was nothing more that could be done for Theo other than pray.

Hayley says: “That night was devastating. We were in bits. We sat there for hours watching that monitor beeping, willing for his blood oxygen levels to rise, but not once did they go above 89%. In the early hours we were persuaded by the registrar to get some rest in a side room on the unit. She was absolutely fantastic and we knew that Theo was in the best care possible. Mark stayed at his bedside whilst I got some rest. I remember Mark coming back into the room in the early hours and I was dreading what he would say, but thankfully it was good news, Theo had started to stabilise and it seemed that the steroids had started to kick in just in time. We were so relieved, but the reality of how close he was to death has haunted us ever since”

But despite the progress Theo had made, he was by no means out of the woods. Each attempt to reduce his dose of steroids failed and despite progressing to Bipap, the less invasive form of ventilation, he was still on intensive care, 13 weeks later, and still in the same bedspace as he’d always been. Most premature babies would have made progress and left intensive care by this time. Hayley and Mark were also warned that if Theo’s lungs didn’t grow, within a few months there would be nothing more that could be done for him.

Hayley says: “We kept being told that he ‘just needs to grow’, but he was growing beautifully, tolerating breastmilk really well, and it was frustrating because despite him appearing to grow stronger from the outside, we knew that his lungs weren’t catching up and he was still very weak”

Just before what would have been his due date, Theo had to undergo an operation to correct a condition called ROP (Retinopathy of Prematurity) which can cause blindness in very premature babies. Despite Theo having developed the most severe case of the condition it was fully correctable by a fairly straightforward operation. Hayley remembers feeling how strange it felt to know that one problem could be solved so relatively easy but that when it came to Theo’s lungs, no more could be done.

Very gradually though, Theo continued to improve, and after returning to the ventilator for a short while after his eye operation, he quickly moved down the stages of ventilation onto CPAP without any more major setbacks. Having been on a the strongest steroid for longer than would normally be advised, an amount that came to be know as the “Theo dose” by the medical team, he was moved on to another steroid and continued to do well. On his due date, Theo finally moved onto High Flow

Mark says “Theo was getting stronger and more aware by now and he hated having the CPAP mask and prongs on his face. He constantly tried pulling them off and we sat there all day putting them back on his face so that he could have the oxygen he desperately needed. It got to the point where he was close enough in stability to try him on High Flow, which was a nasal cannular and would be much more comfortable for him. I asked the team if they could give him a trial on High Flow, which they agreed to on his due date, and when he went on it he was instantly more comfortable. We were so excited to see more of his face and to start seeing some progress”.

After more than 100 days on intensive care, Theo graduated to the high dependency unit, a momentous occasion for his mum and dad. A month later their happiness was cut short when they got a call from the unit telling them to come in straight away to speak to a surgeon. There, Hayley and Mark were told that an investigation to check on the severity of his reflux had uncovered a different unrelated issue. Theo had a problem with his intestine that, though nothing to do with his prematurity, was potentially lethal. He was being rushed to surgery immediately for suspected malrotation.

Hayley said: “I just couldn’t believe what the surgeon was telling us. Theo had no symptoms at all which is very unusual. I felt so sad that Theo had to go through this. We had a few minutes with Theo before he was taken down and I felt he was looking at us like he knew. It was heartbreaking for us. Thankfully the operation was a success but afterwards we had to go back to intensive care. Theo had been close to death so many times while we were on that part of the unit but we’d blocked it out to move forward. Going back felt like having posttraumatic stress, hearing all the machine noises, and I found it very difficult to deal with. We were there for another week while Theo recovered from his operation and that whole time I felt sick and anxious.”

“The whole time that Theo was in NICU we always tried to remain positive and strong for Theo, but there were times, such as this occasion, where it would have been helpful to have some emotional support available on the unit. There was a counselling service available but I would have had to travel across Cardiff to use it and I didn’t like leaving Theo’s bedside for long. That is why I think the new emotional support service funded by Tiny Lives is such an amazing idea which I know will help hundreds of families.”

As it turned out, the operation on Theo’s intestine was more of a success than anyone could have hoped because after that, for no fathomable reason, his breathing became easier too. Where once Theo had needed 100% oxygen, he now only needed around 35% which meant his lungs were working far more efficiently on their own.

At nearly six months old, and now affectionately known as the Grandad of the neonatal unit, Theo had outgrown neonates and was moved on to Island ward at the children’s hospital where he surprised everyone by graduating quickly on to the lowest form of ventilation called low flow. This is the best news possible for Hayley and Mark because it means that Theo’s lungs are growing and developing – the vital piece of news that they’ve been longing to hear. Theo has severe chronic lung disease but in time, as he continues to grow, his lungs will become stronger and he will need less oxygen support.

On 20th September just over 6 months after Hayley and Mark arrived at hospital for a check, they finally got to take their baby home. Hayley says she can’t put in to words how lovely it was to do normal family things like going for walks and cuddling up on the sofa.

However after only 9 days at home Theo’s sickness turned a dark yellow/green colour and Hayley and Mark knew that this wasn’t a good sign. They rushed him straight into hospital where it was found that he had a blocked bowel caused by scar tissue from his first surgery.

Hayley says “Being back in hospital was devastating. It felt so unfair that Theo was being dealt this hand in life. All we wanted was to be at home as a family and keep him protected. We were so worried about the surgery as we knew that it would mean that Theo might have a long recovery and that he would need to go back onto the ventilator. We were worried that he might struggle to get off it, as had happened before. We were also terrified about Theo being in hospital at this time of year because of the risk of him catching a cold or flu which could be life threatening for him.”

The surgery to correct the blockage was a success and Theo was admitted to PICU on the ventilator whilst he recovered. Hayley and Mark were told that he was stable and that they would try to get him off the ventilator the following day. However Theo quickly deteriorated, for no known reason, and was requiring increasing levels of oxygen and ventilation support. As he had been on many forms of sedation and painkillers throughout his short life he had grown a tolerance for them, meaning that the team had to heavily sedate and paralyse him just to ensure that he didn’t move and work against the ventilator.

Hayley says “We so were relieved that the operation had gone well and were pleased to know that we might be going home in a few days. And then only 12 hours later we were told that his body was reacting very badly to something and they couldn’t understand why his lungs needed so much support”.

Two days after the surgery, at 3.30am, Hayley and Mark received the phone call that nobody every wants to receive. They were told to come to PICU immediately.

Hayley says “We ran. We didn’t know what had happened but we know from experience that this call is never good. I was hysterical crying, running, not knowing what I would find when we got there. When we got there we saw about 20 people around Theos bedside performing CPR. It was the most horrific thing I have ever seen and it will haunt me for the rest of my life, seeing my baby white and lifeless knowing that he might not come back around. A doctor told us they had already been doing it for 15 minutes to no success. I pleaded for them to try everything and for Theo to come back.”

After 25 minutes Theo’s heart started beating again, but he was in a very serious condition. Hayley and Mark were told that Theo had received CPR for a very long time meaning that his brain may have been starved of oxygen and that there was a very high chance of him being brain dead. For days, Theo was paralysed whilst the team tried to keep Theo stable and Hayley and Mark didn’t know if he would be alive underneath it.

Mark says “We had to sit next to him not knowing if he was the same boy we brought into hospital, or if he was alive at all. Every day they would turn off his paralysis for a few hours to see if he moved and responded. The first time they turned it off I kissed his ear and he moved his head away from me, which he always does, and that gave me so much hope. I just knew that he knew we were there.”

Day by day Theo made a miraculous recovery and within only 10 days he was back on low flow, awake, smiling, laughing and back to himself. It took a further two weeks to successfully wean him off all his sedation and Hayley and Mark were finally able to take their son home again on 26th October, where he continues to thrive.

Hayley says “We just can’t believe he still alive and we feel so lucky that he has been given this second chance at life. He still has issues with sickness and feeding and we know that we have a long road ahead of us with his development but we are just so grateful that he is here with us. He is such a strong boy and is doing fantastic considering his start in life. He constantly surprises us and the medical team. No matter what is thrown at him, he comes through and I just don’t know how he does it. We’ve spent over 7 months in hospital this year which has been very difficult for us but we find our strength in him and we are so pleased to be home”.

The Tiny Lives Appeal

During his time on the neonatal unit, baby Theo benefitted from several pieces of equipment funded by the Tiny Lives Appeal. He was among the first to use a Baby Leo, a state of the art incubator reserved for the most critically unwell babies. The incubator has a range of features including inbuilt weighing scales, a special heating system that maintains temperature at all times and a mechanism that allows the baby’s bed to be pulled out so that parents are able to be close to their babies without them having to me moved.

Hayley says: “Theo was so sick at times that no-one, not even the medical team were able to move him unless absolutely necessary. Taking him out to weigh him at those critical times was not an option which is by no means ideal for a premature baby like him because their food and most vitally medication is measured to their exact weight. Without the inbuilt scales it would have been so much harder to get everything accurate.

We could also personalise his incubator with the digital screen and choose colour sequences inside the incubator for him. I know it might not sound like much but it’s the closest we came to choosing an outfit for him for a very long time.”

Babies like Theo have to undergo countless X-Rays to check on their major organs but more frequently to make sure that a line or tube carrying vital, oxygen, medicine or food has been inserted properly in to tiny veins and airways. The unit’s new DR X Ray Machine, funded by the Morrisons Foundation as part of the Tiny Lives Appeal allows X-Ray images to be taken without moving a baby and gives instant results digitally where previously, an image may have taken up to 20 minutes to process. For critically ill babies, each second is vital.

Hayley says: “I can’t even remember the amount of times that Theo had an X-Ray on the unit. The medical team had to move or change his tubes frequently and every time they did that there was a need to check that they were in exactly the right place. Each time Theo was moved his oxygen requirements went through the roof so if they’d had to move him each time he needed an X-Ray things would have been a whole lot harder. There were points where Theo had to be intubated that he would have been seconds from death. Having the results from the X-Rays appear instantly most probably saved his life more than once.”

The team at CHC will be fundraising for Noah’s Ark over the next year. For information on how you can get involved please email Clarissa on [email protected].

Thank you

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