If you read one blog post today, make it this one. Leigh is mum to Warwick, born very premature and very poorly. Hers is an incredible story…
At 29 weeks I was enjoying my pregnancy immensely so it came as a huge shock when I started having pains that soon became unbearable. Not actually realising I was in labour we went to the hospital to get ‘checked out’ and at 7.40am, our baby boy arrived. It was all so quick it was difficult to take in.
The baby was immediately placed on my chest with those beautiful dark blue eyes staring up at me…
…but there was clearly a problem with his lungs.
The medical team took him over to the incubator by the window. It was like a dream. A slow motion dream.
Hours later I was able to see our little Warwick; all those wires covering our tiny, fragile baby was just so overwhelming.
Three weeks later while Warwick was still on the NeoNatal Unit he got an infection in his heart. He was given antibiotics but they weren’t working so we had to sign a document giving permission to the doctors to try an adult dose of a different drug.
A couple of days later the consultant asked to see us. Our world was about to come crashing down. The drugs weren’t taking effect so the next option was to transfer him to another hospital to medicate him through his scalp. All I could think was ‘not his head, its the only place that’s been untouched’.
Little did I know that this was just the beginning of the bad news. The consultant continued. He explained that Warwick’s most recent brain scan showed that a bleed had damaged his brain front, back, left and right. He went on to say that ‘IF’ Warwick was to survive his heart infection, he would be blind, deaf, have cerebral palsy, be quadriplegic, unaware of his Mommy or Daddy and not know day from night. Just devastating words to hear. I asked the consultant the same question three times to be absolutely sure I was understanding. “Will he have a quality of life?” “No” he replied, on each occasion.
Warwick was losing his energy and fight.
When they struggled to get the cannula in his tiny collapsed veins he stared at me intently with those big dark eyes and squeezed my finger with the pain. I told my husband then that Warwick had had enough.
We talked things through with the consultants but it felt like there was already an unspoken agreement that we would be doing the best thing by letting him go. No more pain. No more struggle.
We decided to get him baptised immediately.
We were given a private room to say goodbye and with the wires, stickers and machines removed (all except an apnoea monitor to alarm us if he stopped breathing) we could have all the cuddles we wanted – it’s called ‘kangaroo care’ – keeping baby in constant contact. No one thought he’d be able to breathe unaided for more than an hour. All in all the apnoea monitor went off about 18 times; we used to tap his chest to remind him to breathe. His upper lip and around his eyes would go a shade of blue.
After 24 hours we decided to take off the monitor and make ourselves stand back if he stopped breathing. We agreed that if he’d had enough, we’d let him go.
Amazingly, we ended up being in that room for eight days and nights! Warwick had stopped breathing more times but used to kick start himself again! The consultant came to see us and offered to take Warwick back to ITU but we knew he’d give up if he went back into an incubator. He was loving being on my chest far too much for that! We were told we could go to a hospice or palliative care at home could be arranged. This is what we thought was best for us and a fabulous team came to meet us and were on call 24/7. They came to see us everyday at home and changed Warwick’s NG tube.
After four weeks at home, with Warwick still going strong, it was clear that things weren’t proceeding as originally thought. The palliative consultant suggested we go to hospital for Warwick’s heart to be scanned.
Incredibly the infection had cleared up!
His heart looked fine. His brain still showed damage but all three doctors in the room agreed ‘Warwick was going nowhere’. Yes, he had cerebral palsy but they weren’t forthcoming about saying to what degree and what he would and wouldn’t have.
The consultants just couldn’t understand how he had got rid of the infection. All on his own, without drugs and only weighing 3lbs!
Fast forward five years to today. Our tiny baby is now a very cheeky 5-year old who understands everything. He has a naughty sense of humour, is very loving and enjoys school immensely. He has spastic quadriplegic cerebral palsy so his muscles stop his movement but he works extremely hard in physio and loves doing it. He is visually impaired but his hearing is over and beyond the norm. He is very vocal and tries hard to get words out. He certainly makes himself known. He’s going to Liverpool soon to take part in a national cheerleading competition and he now has a little brother who he eggs on to do naughty things!
One thing we can safely say about Warwick? He definitely has quality of life.
Tommy’s Midwifery Manager Emma Lees-Laing said:
“I can well believe that the neonatal nurses at Birmingham Heartlands Hospital where Warwick was treated had never seen a recovery like his before, and don’t think they’ll see one again.
Warwick is very special indeed and his recovery is nothing short of astonishing.
“And it’s not just his strength and determination which is so moving but that of his parents, Leigh and Dave, too. It’s really wonderful to hear how well Warwick is now doing at school after battling the toughest possible start in life.”