Ventilators and transfers – Abby’s story

Abby's son Felix was born at 27 weeks and spent most of his neonatal journey battling to come off the ventilator. Here Abby writes about what it was like to see her son on oxygen support.

At a routine appointment, I mentioned to the midwife that I thought my bump seemed a little on the small side. The midwife took my measurements and decided to book me in for a scan – just to be safe.

We didn’t feel at all anxious about the scan – we were mostly just excited to be getting an extra sneak peek at our little one! I was 26+4 weeks pregnant and as soon as the image of the baby was revealed on the screen all hell broke loose.

The scan revealed lots of issues with the baby which meant he would have to be delivered very soon. We were told that the local hospital wasn’t equipped to deal with babies born before 28 weeks. An ambulance was called and I was taken to a level 3 hospital which fortunately wasn’t too far away.

The next five days are kind of a blur. I was diagnosed with pre-eclampsia and remember countless tests being done on myself and my baby. At 27+1 weeks the delivery couldn’t be put off any longer and an emergency c-section was performed.

The huge team of doctors told us that I’d delivered a son but then didn’t speak to us again for 18 minutes as they worked on him. It was as if time stood still for those 18 minutes but eventually a doctor turned around and gave us a thumbs up.

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Our son Felix weighed 690g. It wasn’t until the following day they that I got a chance to visit him in the neonatal unit. He was beautiful but not yet ready for the world. Those early days saw him battle jaundice, anaemia, water retention and a hole in his heart. An arterial line placement went wrong and caused Felix to lose a part of his thumb. Felix struggled for weeks to get off the ventilator and eventually was given some steroid shots to help get him on to CPAP.

Still weighing only 700g, Felix was transferred back to our local hospital. This was supposed to be positive but we had got so used to where he had been before. His trip didn’t last long. After only a week he was back in the level 3 hospital battling suspected NEC.

Felix was incredibly poorly at this point and we felt very uncertain. He was back on the ventilator and the drugs rack next to his incubator was full to the brim.

After two weeks Felix made it through NEC and had avoided surgery. He had been unable to be fed through his tube in this time so he was still tiny. Blood was beginning to show in his nappies and we were told he had renal vein thrombosis and the very worst case scenario would be that he would lose a kidney. Six month after being told this it was confirmed to us that he had indeed lost one kidney.

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When our son was two months old another course of drugs were given to get him off the ventilator. It worked and over Christmas our boy made it onto high flow and doubled his birth weight to 3lb. Sadly things again started to go downhill again around New Year. He was back on the ventilator and very unstable. Some days we would arrive and he would be on 100 per cent oxygen.

The consultants had a big meeting on 2 January as everyone was at a bit of a loss as to why Felix couldn’t keep off the ventilator. We didn’t think it possible but things got even worse. He couldn’t maintain his blood pressure, he was swollen and an X-ray showed that he likely had NEC again and this time would need surgery.

Doctors began trying to find us a surgical bed at a children’s hospital. Fortunately we got into our most local one. The specialist ambulance arrived and we were whisked away from our NICU family. The ambulance ride was terrifying. Felix was not stable at all. The surgeons were scrubbed and ready when we arrived and then were baffled when they examined him and declared he didn’t need surgery. Yet.

For a week Felix puzzled everyone with confusing X-rays. In this time he started to make progress with his dependency on the ventilator. Some more invasive tests were done and it was deemed Felix would need surgery, but not on his bowel like we had all thought but on an inguinal hernia.

The surgery that followed in the next few days was a complete success. On day 79 Felix made it out of intensive care and into high dependency. We had seen so many other babies move through the ranks and we were so happy it was our turn. He was growing but his lungs didn’t seem to be improving so a third and final course of strong steroids were started to get him off the pressurised oxygen onto just a trickle of oxygen.

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After three and a half long months, the level 3 hospital said it was now time for us to go back to our local hospital where our journey had all began and where we spent a brief week in the early days. No one expected us to be there long as he was nearly ready to come home. Felix had other ideas. As they weaned down his breathing medication a third round of sepsis hit. Some kind of chest infection saw him back to intensive care and my first Mother’s Day was spent desperately willing my son’s blood reports to be good enough to keep him off the ventilator. It was very close, but luckily the team understood how hard it had been to get him off the ventilator in the first place and everyone tried to make him comfortable enough to not need it this time. On Mother’s Day night at around 10.00pm his bloods came back and his infection was getting better.

Five days later we were back in the nursery and starting to think about home again. All he had to do now was pass a test to determine how much oxygen he would need at home. It took three attempts but eventually we had a discharge date. We spent two nights in transitional care first, learning how to do his drugs and care for our complicated son.

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On day 146 we finally unplugged his oxygen from the wall next to his cot space and put him onto a portable oxygen cylinder. It was amazing to walk freely with my son in my arms for the first time.

Felix is now nine months old, still tube fed and on oxygen, but he is laughing and getting stronger every day. I’m so grateful to all of those we met along the way and those who did everything they could to ensure we left the hospital as a family.

To the parents whose child is on a ventilator, I know exactly how difficult it is to see your baby reliant on such an imposing machine. Frankly, I was a wreck the entire time. The mantra I told myself in my head over and over was: “Whilst he is here there is still hope.” I think that telling myself this got me through my darkest times and I hope that it can help you too.

If your baby is facing a hospital transfer, be reassured in the knowledge that the transfer team are absolute experts. As a parent, the idea of a hospital transfer is both new and scary but remember that they’ve got this. This is their day job and so they know exactly how to take care of your little one. Find reassurance in knowing that you can trust them.

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