At 20 weeks we were asked whether we wanted to continue with our pregnancy. Our son, Harry, had been given just a 50% chance of survival because our scans had shown he had a congenital diaphragmatic hernia. We knew instantly that we wanted to give him that chance.
We were told that he’d need to be delivered at Leeds General Infirmary (LGI), far away from our home in Scarborough. So we had prepared to visit the LGI, meet the Neonatal Intensive Care Unit (NICU) team and see Eckersley House which was to be our home while Harry was being treated.
But this never happened. Despite all the preparation, we weren’t prepared when Harry arrived two months ahead of schedule.
Doctors had planned to delay his birth, but when we arrived at the LGI and they checked his heart rate, it was clear he was in distress.
Within minutes we were rushed down to theatre, I was given a spinal to numb me from the chest down, but was awake throughout the whole procedure. Fear hit us harder when the doctors discovered Harry’s cord was wrapped around his neck – but the panic of needing to get him out alive overrode any fear, and within moments Harry was born, then intubated and taken off to NICU.
It wasn’t until the afternoon that I got to see him. Fortunately, Martin was able to see him beforehand and keep me updated on how our little boy was doing. It was all a bit surreal; I didn’t really believe what was going on. I didn’t register that this little baby in front of me was the one in that had been in my tummy. And there was so much happening around his tiny body, lots of machines beeping everywhere and so many tubes and wires attached to him.
The first two nights were very difficult. While we waited for a room to become available at Eckersley House, I remained in a separate room on the delivery ward due to my caesarean scar while Martin had to find a hotel – where he stayed with my worried mum and one of my sisters. Those 48 hours were turbulent. We were told that Harry might not survive because he was so tiny. Surgeons couldn’t even operate of his hernia because of his size.
At two days old, Harry was also diagnosed with a heart defect, known as narrowing of the aorta – this would mean that he would need open heart surgery when he was strong enough. But that very night, he crashed. Martin ran from his hotel as they said they didn’t know if they could save him. Even being in the same city at this point was too far apart.
That’s why Eckersley House is so important to us as a family. Once we were able to move in, we were literally just across the road, so when he had future crashes we were with him in moments as we were so close. Having had that horrendous experience when he was just two days old made Eckersley House all that more vital. The hospital could ring us in the middle of the night – directly to our bedroom - and we could be there within minutes.
Eckersley became our ‘Home from Home’ for four months– we brought things from home to make our room ours. We had a few changes of clothes which may seem like nothing, but it makes a huge difference to your emotional well-being when you’re in a constant state of worry. We even had our own food cupboard and shared a cooker, fridge and freezer which helped financially. It could have been so expensive, but having these utilities which normally we’d take for granted, was gold dust.
Not long after we moved into Eckersley House, Harry had his first surgery which went as well as expected, but during his recovery he became very poorly. He was forever getting infections which were making his breathing worse, and when he was three weeks old he hit a real low.
So low that we were given a parents’ room on the ward because the doctors didn’t think he’d make it through the night. I was helpless, I should have been able to make him better, but how could I? I didn’t want my boy to die.
Towards the end of the week, we began to see better results from Harry– though we were told that they weren’t sure whether his lungs would grow with him.
We started to see a different side of Harry, he grew stronger and braver. It was as if he was telling us he wasn’t going to give up. At eight weeks old, he pulled out his tube which was helping him to breathe - he was determined to breathe by himself. And eventually he did.
He was so defiant over the next two months; he even managed to fight off MRSA. And just two weeks later, Harry was back in theatre for his heart op. And after that, it was as if Harry had come back a different boy. He was breathing much better, putting weight on and coming on in leaps and bounds.
When he was four months old, we were delighted to hear that we could bring Harry home. So after 119 days at the LGI we were finally transferred back home. It hasn’t been plain sailing since then, he caught pneumonia and bronchitis and in March had an operation for his reflux.
There have been lots of up and downs throughout his life, from being told Harry may not survive to seeing him grow stronger and finally being able to bring him home.
We can’t thank Eckersley House enough for letting us be there for our child, it was a life saver for us, especially in the four months we were there.