When Phil and Elizabeth Kirby lost their baby twins, the pain was unimaginable. The support of charities SANDS (Stillbirth and Neonatal Death) and TAMBA (Twins And Multiple Births Association), along with friends and family helped them try to piece their lives together. A year later, Phil is hoping to give something back, by completing not one, but four big runs. He speaks to NATALIE WALKER about his passion to raise funds and awareness of a disease which affects premature babies.
Phil and Elizabeth Kirby were over the moon when they found out they were expecting twins.
However, at the 20 week scan they found out one of the babies, who they called Oscar, had two faulty valves in his heart.
He died on October 9 2015, in his mother’s womb at less than 28 weeks.
Phil, 36, of Chorley, says: “We slowly watched him die of heart failure on weekly scans and we thought life couldn’t get much worse.
“We found solace in the fact that Felix was not affected by this and was growing really well and healthy. He was our hope.
“This hurt more than anything you could imagine, but we always had Felix which allowed us to see a future.
“And then we went into hospital on November 15 at 33 weeks, for Felix to be checked.
“The monitors picked up regular contractions and along with a test which came back positive for early labour meant Liz had to be admitted to the nearest neonatal unit with spare cots at Wythenshawe Hospital.
“After 36 hours Felix finally decided he was definitely going to be making an appearance and after a further 12 hours our beautiful little ray of sunshine and hope was born.
“Felix Steven Kirby, was 4lb 6oz, crying and scoring nine on his Apgar score.
“It was the best sound we have ever heard and we thought finally we were going to be okay.
“He needed no help with breathing and was only in the incubator as there was no room elsewhere.
“He was so alert. When Liz cuddled him later on he would try to feed, still too little but he was trying.
“He could lift his head when on his tummy and he reacted, especially to my voice.
“Even right at the end when they were moving him to Manchester and he was on morphine, he turned his head and opened his eyes to my voice.
“Everything was going okay and we were adjusting to Felix needing a couple of weeks in hospital until he was feeding independently – we were more than likely going to bring him home for Christmas.
“On November 22, we packed toys for our older children, Ethan, then eight, and Evie, then six and arrived at hospital about 10.30am, looking forward to spending the day there.
“On arriving we took our turns to sit with him but we were both convinced he wasn’t himself.
“His heart rate was higher than usual, he looked bloated, he’d been sick, his oxygen levels were lower than usual, he had a temperature and he just didn’t seem right.
“Stupidly, we allowed the nurse to talk myself and Liz into thinking nothing was wrong and these things could all be considered normal for a pre-term baby.
“We will never forgive ourselves for this. We knew something wasn’t right but had no idea anything could progress so quickly.
“When I took the children in to change his nappy at lunchtime I found blood in it and asked to see the consultant but it was all too late.
“They fully ventilated him, gave him morphine, put in a central line and did an X-ray which confirmed NEC (Necrotizing Enterocolitis).
“This is a horrific condition where the bowel of a baby dies and then disintegrates.
“There is no clear cause or treatment other than to start antibiotics, stop milk and if the NEC does not progress, remove the affected part of the bowel with surgery.
“Felix showed no response to the treatment and just rapidly worsened over the evening.
“He was transferred to St Mary’s Hospital in Manchester at around 11.30pm.
“At 1.10am on November 23 2015 they said he wasn’t responding to treatment, they couldn’t operate and when we walked back in, they’d just resuscitated him.
“We saw him bounce on his cot after the adrenaline.
“We sat by him but within 10 minutes his heart had stopped again so we stood in horror as they brought out the crash cart.
“They were shouting for help and ripping apart his incubator.
“There must have been 15 adults shouting around him.
“The consultant approached us to ask what we wanted, which was to stop, as we felt he’d had enough.
“They rushed to get his tubes out so Liz could hold him as he died, but he was already gone.
“We were taken to another bereavement suite, the second one in as many days.
“Our families arrived and I then had to go to our older children who were staying nearby and explain to them that their second baby brother had died.
“Our hope, our future, had gone.
“To lose two separate babies in two unrelated events. Life is changed, forever.
“Sharing this a year on, we are amazed at the fact that we are surviving.
“Life is going on, the pain is no less but we are better able to hide it.
“Our living children and each other give us reason to get up every morning and we can view the future with some hope now, most days.”
More than a year on, Phil, a senior account manager, is now aiming to raise as much as he can for TAMBA bereavement support group and SANDS.
He has already completed the Manchester Half Marathon and the Chorley Fire 10k and is in training for the Great Manchester Run Half Marathon in May and the Wigan Half Marathon on March 19.
He says: “I am doing a lot of training, I was 15-and-a-half-stone and now I am 13-and-a-half stone.
“I wanted to do something that was hard work.
“We could not have got through our boys’ deaths without the support of the two charities. They put us in touch with people in the same situation and offered a lot of support.
“So please give generously as although I think our particular circumstances are unique, we are not the only parents who have lost babies.
“The specialist support from TAMBA and SANDS has been and still is, absolutely invaluable.
“I also want to raise awareness of Necrotizing Enterocolitis and disease of the bowel in premature babies.
“I ask that people please give generously.”