Shooter, Luke Stephen

[left:e2f817091c]http://www.cherubs-cdh.org/Album/new/shooter-luke2.jpg[/left:e2f817091c]This is the story of Luke. He was diagnosed in utero at 20 weeks with a left-sided diaphragmatic hernia and multi-cystic right kidney. Luke is our second son – Jordan, our first son, had no birth defects whatsoever. We went to our local hospital for a routine 20-week scan. “Something” was detected, but they couldn’t establish what! The consultant was called, and although he examined the ultrasound scan, he was also unsure and referred us to Dr. Twinning at Queen’s Medical Centre Nottingham for the following day – a Friday. I can remember sitting in the scan room for what seemed like an eternity. My husband and I staring at each other in disbelief – what should have been a routine scan was turning into a nightmare!

We were due to leave for a family holiday on the Saturday, following our Friday consultation at Nottingham. We collected Jordan and went to tell our families, still not quite believing what was happening to us. We waited to see Dr. Twinning with deep apprehension. He diagnosed a large left-sided diaphragmatic hernia and rs cystic kidney. He explained that the surgeons could repair the hernia, but the chance of survival was slim, due to the fact that Luke’s lungs would not have the opportunity to develop. What a bomb-shell! The geneticist advised us to go on holiday the following day, which we did with heavy hearts, but which in hindsight was the best tonic we could have had. It was preparation for the trials that lay ahead.

It was a good pregnancy, interrupted every four weeks with the trip to Nottingham for scans and counselling from Miss Kapila OBE, who explained everything in a most truthful way. Luke had a 20% chance….and that was probably optimistic. I think that that was when the reality hit me. I just sat there with tears rolling down my face, head spinning, and feeling sick and dizzy. My baby boy, who I could feel every day would probably die – how on earth could we get through this?

We were shown the neonatal intensive care unit where the battle for Luke would be played out. This would be our goldfish bowl world for the foreseeable future. Jordan, our eldest son was not yet three years old, but pretty grown up in most things. Trying to explain this potential disaster to him was a real trial, but he accepted that Mummy & Daddy were going to go into hospital for a while, because his baby brother was poorly. He was going to stay with Nana and Grandad.

The day arrived and we traveled to Nottingham, only to find that there wasn’t a neonatal incubator for Luke……..come back in two days. Can you imagine? I was eventually induced on my 29th birthday, hoping that he would join this world on that day. He was born at 08.10 am on the following day, and I saw him for a fleeting moment . He had masses of dark hair and big blue eyes – I thought I heard him cry. I counted the doctors….1,2,3,4,5,6,7, and nurses….1,2,3, all waiting to take my baby away. He was whisked off, and I was left alone, staring at the ceiling. I vaguely remember the medical consultant arriving and mouthing words-- “Very worried about Luke”, “Expect the worst”.

I was wheeled to the postnatal ward. Long corridors with pictures of smiling babies on the wall – I closed my eyes, crying silent tears and prayed. Mum, Dad and Jordan arrived, and after an agonising nine-hour wait, I was asked if I wanted to see my baby! The neonatal ward was an alien world. Bells and beeps and alarms sounded constantly, and when I eventually met Luke for the first time, I could hardly see him for lines, pipes, tubes and wires. He was surrounded by six or more pumps, the ventilator, o2 SATS monitor, upper and lower body o2 SATS, ECG monitor, BP monitor and another machine. The doctors explained that this was blowing nitric oxide through the ventilator, which was in oscillation mode, due to Luke’s small friable lungs.The doctors explained that Luke was in a critical condition, but stable.

We were at Luke’s side all of that weekend. Miss Kapila, the consultant surgeon, visited us and explained that we had a window of opportunity to operate on Luke, and that subject to him remaining stable, she would operate in three days time. The operation was booked and a plethora of professors were gathered, supported by an army of nurses, nursing assistants and medical students. Seven people took Luke away for his appointment with destiny. We waited, encouraged by the photographs of babies who had survived CDM. The air was heavy and time stood still – what should we do, what could we say?

Two hours later the surgeon appeared and explained that it was no wonder that Luke was so poorly, as every organ except his kidney was in his chest cavity – one lung being half normal size and the other was a quarter the size it should be. We went to see Luke. His wound was covered by a gortex patch, where his skin couldn’t be stretched to meet. The operation had been a success-- now it was up to Luke and divine intervention!

The sedative and paralysing drugs were to be maintained for at least five days, and then he would re-join this world, and we would see what was to be! On D Day + 5, the drugs were stopped, and Luke came back to us. What a handful! He fought the tubes and pipes and constantly sought to pull his ventilator tubes out!

After three weeks by his side, I had to let go and return home – Jordan needed me as well. A routine became established – on the phone every four hours, travel to Nottingham every other afternoon to spend two precious hours with Luke and bringing new clothes and toys as well as gifts for the ICU team. I spent weekends with Luke, and really time stood still. On one particular day I phoned, and nobody could talk to me. The doctor would call me back. Panic stations…what was happening? The old feelings came flooding back, pacing the floor until the phone rang. Luke had pulled his tubes out and… “We are going to try him without the ventilator, and he is having a trickle of oxygen through nasal canulas.” What progress! Feelings of jubilation, excitement and relief. We went to see Luke, and I breastfed and held him for the first time…what a feeling.

Things went forward in leaps and bounds, and over the course of the next few weeks, he was weaned off more drugs. After eight weeks, he was moved to the low dependency unit, and after a further three, going home was in sight! My dream was to bring Luke home for Christmas, and we did. He was the best Christmas present I could have wished for.

Luke is now a real tinker. He brightens up the room when he walks in. His brother is very protective, but Luke runs and climbs and gets into scrapes with the best of them! Footballs are the love of his life, and he scores goals with a passion……none more than the greatest goal he will ever have to score! The doctors gave him a 20% chance of seeing this time and kicking his goals, and now he is almost two years old. In Cyprus “Luke” means “fighter.”


Written by Luke's mom, Becky Shooter (Great Britain)
2002