"Having a baby in NICU completely takes over your life" - Casey's story

My husband, Jamie, and I were eagerly awaiting the birth of our baby boy. Our daughter, Charlotte, was nearly three and thrilled about becoming a big sister. At four days overdue, at 5:20am on Monday 15th May 2017, I woke up with contractions. The midwives frequently checked my baby’s heartbeat, telling me it was good and strong. I was in the birthing suite by early afternoon, and he was born at 6:13pm. Then it all became surreal.

The room was suddenly crammed with doctors, nurses and midwives. They spent 23 minutes resuscitating our baby boy. We were told he weighed 8 pounds 5 oz, that he was really unwell, and he needed more care than they could offer. He would be transferred to a NICU elsewhere. We saw him before he was moved, overwhelmed by all the lines, wires and tubes. I cried. I apologised. They kept me in and called when he had been safely received at St Thomas’ Hospital NICU.

The next morning, we travelled to the hospital. Before we could see our boy, a consultant attempted to explain what happened. She called it hypoxic-ischaemic encephalopathy (HIE). We had never heard of it. For some unknown reason, despite all seeming perfectly fine, our son’s brain suffered oxygen starvation for over 20 minutes. He had no doubt suffered severe brain damage and only time would tell if he would survive, let alone what the long-term effects would be. He was ventilated and underwent 72 hours of therapeutic cooling treatment to hopefully prevent the damage from spreading further.

We were given a NICU pack which contained two knitted squares, which I swapped every day between me and him. We told the hospital our son was called Alfie and NICU staff made him a beautiful, bright name sign for above his bed. It was so difficult explaining to Charlotte that her little brother wasn’t coming home. I called NICU every night when we went to bed. For the first time in years my phone was on loud overnight.

Alfie had two MRI scans which showed he had suffered severe and permanent damage to his white brain matter, and bedside EEGs were showing abnormal brain activity. He had frequent seizures and was on a lot of medication, most of which I couldn’t even name now if I tried. He was fed via NG tube. At four days old, we had the exciting news we would finally get to hold him! It took two nurses to extract him with his tubes and lines and place him on a cushion on me. We swapped after about 40 minutes, so daddy got a cuddle too. The nurses took precious photos for us. The following day we took Charlotte to meet Alfie, wearing her new “big sister” top and buzzing with excitement. She was so respectful of the staff, the other babies, and their families. She stayed for a little while, stroking his hand, and telling him she loved him.

Alfie’s reliance on the ventilator decreased daily. We loved seeing the ventilator indicate that he had taken an unsupported breath. Doctors took lumbar puncture samples to see if they could shed light on any possible genetic connection to Alfie’s condition. We answered endless questions about our medical and personal history. The nurses helped organise food vouchers for us to use in the cafeteria, as well as securing some funding for travel and expenses. They were truly angels. They were so generous with their time, often having simple everyday chats. We were allowed to do some of Alfie’s cares. It’s unbelievable how much joy it brought us to be able to change our son’s nappy!

I offered them the newborn clothes that we had because by the time Alfie got out (whenever that would be) they wouldn’t fit. The staff were so grateful, explaining they didn’t have a lot of newborn (or over) sized clothes because so many NICU babies are premature. We have found that most people presumed Alfie was premature. Many NICU babies are and Alfie looked huge compared to them.

My husband Jamie’s birthday was while Alfie was in NICU and we had a lovely surprise when the staff put Alfie’s handprint and photo on a special birthday card for him. When Alfie was exactly three weeks old, they removed the ventilator and he was turned on to his front to help keep his little lungs clear. He was breathing unaided and it was the most magical and miraculous thing to witness! His last recorded seizures were in the early hours of 8th June. It was one of the few times we received a call overnight and it scuppered his planned move down to the HDU (High Dependency Unit). His breathing showed no signs of deterioration and the seizures didn’t return so he had less lines and wires and we were given permission to remove him from the cot ourselves. It was glorious!

We got used to our routine, taking Charlotte to visit with us every few days. The staff went above and beyond with her, giving her drawings and stickers. A few days before we left the safety and security of the NICU, we gave Alfie his first bath by the side of his cot, and yet again, a nurse was there to capture this momentous occasion for us.

We watched parents-to-be being shown around the NICU whose babies may need it, so it would be less scary. Most NICU parents are thrown in the deep end where the days are unpredictable and you don’t know what is happening and when. We were extremely lucky to have the NICU staff we did. They were kind and generous and kept us informed as much as they could with Alfie’s current situation and the plans going forward.

Having a baby in NICU completely takes over your life. Alfie’s health – his life – completely consumed our every thought, but we used Charlotte’s routine to force us in to one of our own. Combining this with support from family, friends, and our phenomenal NICU team, meant that we had a very positive experience – as positive an experience as you can have when your new baby is on life support.

We left NICU when Alfie was four and a half weeks old for a ward in the Evelina. As thankful as we were that Alfie could be moved to a ward, we felt a sadness at leaving the warmth and protection of NICU. Alfie is now four years old and the outstanding care, comfort and compassion of the NICU staff is something that will stay with us forever.