She was so tiny, how would she be able to fight against the big battle ahead?

We didn’t find out we were expecting until I was over three months pregnant, fortunately my first scan showed that everything was fine. However, a few weeks later some blood tests during an antenatal appointment showed that the baby was at risk of having a chromosome disorder. This led to more invasive tests which thankfully showed the baby was fine. And they revealed that we were expecting a baby girl!

At my 28 week antenatal appointment, the midwife referred me to the hospital for monitoring and a scan which showed the baby was smaller than should be at that time – she was around four weeks behind. An emergency scan showed that the placenta was not working properly and the baby had severely restricted growth.

We were worried to say the least; we wanted our baby to arrive safe and sound into this world, with as little stress as possible. Then they hit us with the news - I needed an emergency caesarean, but not just that, I would need to deliver my baby girl in Bradford Royal Infirmary as my local hospital couldn’t provide the appropriate care for her.

The next two days were indescribable. I knew I had to keep calm for my baby’s sake, but it was so difficult. All I was doing was worrying about her, whether she’d be well – she would be so tiny, how could she possibly fight the big battle ahead?

When she arrived, my daughter weighed as little as half a bag of sugar - just 550g. She was smaller than anything I had ever imagined, but she was beautiful and she was mine. Grace was whisked away, and later we were told that the doctors had had to perform CPR on her. She had no respiratory output initially, but eventually thanks to the doctors’ hard work she began to breathe.

But it wasn’t over, not by a long shot. After trying and failing to intubate her twice, Grace was moved to the Neonatal Intensive Care Unit (NICU) where she was placed on a machine to keep her airways open, and then was shortly moved onto high-flow oxygen. The doctors said Grace was doing well, but when examining her stomach they removed some green and black liquid which caused them concern. She underwent another scan, which was sent to Leeds General Infirmary (LGI) for a second opinion.

During the night, when she was just five days old, Grace became seriously unwell and we were transferred immediately to the LGI for a surgical review of her stomach. Doctors thought she may be suffering from the bowel disease necrotising enterocolitis. The surgeons at the LGI reviewed her; we were relieved that she didn’t need surgery - however she was still so unwell. Then more devastating news was thrown our way - Grace had sepsis.

When Grace was in Bradford Hospital, we stayed in the parents’ room on NICU, and on arriving at Leeds we were worried about leaving Grace to travel home which was an hour away, particularly as Grace was so unwell.

We didn’t need to worry though, as the nurse caring for Grace told us about Eckersley House. She explained that it was run by a charity called The Sick Children’s Trust and that it was a ‘Home from Home’ for parents with sick children in hospital. That it was there so families could be close with their loved ones. We were told that while Grace was being treated in Leeds, we had a place to stay. A significant weight was lifted off our shoulders.

Grace was treated with antibiotics for two weeks to fight off the sepsis and her condition improved dramatically. Due to anaemia caused by her prematurity, she received several blood transfusions during her stay, but when Grace’s blood levels dropped the doctors became concerned. It felt like we waited an age for the results of the scan, and when the doctors delivered the news, it was not good. Our daughter had a bleed on the brain. Something else she needed to fight.

But Grace did fight, and she did become stronger. She was fed through a nasal gastric tube and began to slowly gain weight. During her stay at the LGI Grace remained in the NICU due to her weight and the breathing support she was receiving. Once her condition was stable, she was transferred to another unit which was closer to Eckersley House, where we’d been staying during our time at the LGI.

We were relieved that we didn't have to leave Grace. Eckersley was so close the hospital that it enabled us to spend all our time with her, while also easily being able to go back to the house for some time to ourselves without being too far away. There was a direct telephone line to the ward in our room at Eckersley and this number was kept in Grace’s notes, meaning we could be contacted during the night (or day) if there were any problems. The house provided us with the facilities to look after ourselves, enabling us to care for Grace as best we could.

After spending 97 days in four different hospitals, during which time Grace went through seven blood transfusions, regular brain scans and eye tests along with many other procedures, she was discharged and sent home on oxygen. The doctors explained that any effects from the bleed on the brain would not be noticed until she was much older, so still we are playing the waiting game.

But now at 14 months old, Grace is no longer on home oxygen and just has regular hospital appointments to check her development and keep an eye on her underactive thyroid. She now weighs 11lbs which is still small for her age, but she’s developing well based on her corrected age. Her favourite thing is to wave at everyone she sees!

We cannot thank The Sick Children’s Trust and the staff at Eckersley House enough for making a very stressful time a whole lot easier.

Kirsty Farmer and Ben Cameron, Grace’s parents