‘Our journey as first-time parents started differently to most people.’ – Rachael’s story

We were due to have our baby boy on 26^th February 2024. It hadn’t been a straightforward pregnancy throughout, and at around 12 weeks in we were told our son might be born with Down Syndrome, and this was later confirmed after a few weeks. This wasn't an issue for us, as he was still our little baby boy and wanted him so much.

We had to attend more and more scans and appointments to look at his growth and also to assess the flow between me and our baby as it wasn't working as it should do. I was admitted to hospital on 11^th December 2023 for high blood pressure after a routine scan and was kept in for two days. We were told that we were potentially going to be having our baby at 29 weeks but then this was then not the case, we were then discharged.

We attended an appointment in Leeds as he had two holes in his heart, and were relieved to be told that these had cleared up – which was the first bit of good news that we had had!

I was then admitted again on the 18^th December 2023 as something called abnormal EDF flow was present, and this could mean we could potentially lose our baby. After a scan the day after, a decision was made for us to have an emergency C-section and at 14:33 on 19th December 2024 our baby boy was born.

This is where our journey as first-time parents started differently to most people.

He went straight up to the neonatal ward. I didn't get to see him until 24 hours later as I was unable to get out of bed due to what we know now as low blood pressure because of the medication given before Alfie's birth.

Alfie was in intensive care nursery and was put on a breathing support machine called CPAP. The next day he needed to be on a ventilator for a short period to help him with his breathing and was then placed back on CPAP for two days. He went on to another breathing support called high flow for 12 days he was weaned off this and on to low flow delivering a low amount of oxygen that he needed.

On Boxing Day he had an echo on his heart which revealed he did have a tiny hole in his heart called and VSD but also had something called a PFO which is a bit in the heart that should closed up before birth and also some turbulence, but was nothing to worry about too much.

We had also had confirmation on Boxing Day through his blood tests around him having the condition Downs Syndrome to which we were prepared mentally for this diagnosis. Everything seemed to be going so well and he was doing amazingly, considering he was born at 30 weeks. We were then moved into the special care unit where the babies don't need as much support which is a next step to going home.

But then on the 15^th January 2024, he was rushed back into intensive care with suspected NEC he was given antibiotics for five days. He went back on high flow and monitoring. The day after he went into intensive care was the first proper time we had heard him cry and it broke my heart as he was having all this done to him, needled, being examined daily, basically being prodded and poked all day everyday and this was the first time he looked properly fed up.

He was weaned off his high flow after seven days and initially wasn't on any breathing support and we got to see his face properly! Without the breathing support he just had a nasal gastric tube to which this is how we had to feed him. He then needed some support with low flow again with tiny amounts of oxygen flowing. We were then upgraded again to the special care nursery after another 21 days in intensive care.

This only lasted two days before having to go back into the intensive care nursery as he was struggling with his breathing and working harder. After being examined it appeared that Alife had now got fluid on this lungs which was making him poorly again. He was given medication to help with this. His X-rays showed an improvement, but he still would need medication for a few weeks as he was showing signs of Chronic Lung Disease alongside Respiratory Distress Syndrome.

Ater that, we were on our last journey into special care with Alfie back ‘in air’ but this didn’t last long – after seven days he needed oxygen again and was clinging on to it.

Finally, after 89 days we could go home all be it in oxygen, but it was home with our little one. Alfie was only on oxygen for another month and has been ‘in air’ since and growing stronger every day.

I’m so thankful to everyone at Doncaster neonatal unit for everything they have find for Alfie and the support given to us.

My advice to anyone else in similar situations is to take it one day at a time but, daft as it sounds, enjoy your little one from day one, all be it in a hospital, as it does get better and easier.