Tiny Sophie defies odds to celebrate 1st birthday

Dad and daughter sharing a pillow with eyes only for each other would have been an unthinkable scene a year ago as doctors battled frantically to save little Sophie’s life.

By The Newsroom
Wednesday, 17th June 2015, 9:40 am
Sophie O'Kane and dad Michael gaze into each other's eyes
Sophie O'Kane and dad Michael gaze into each other's eyes

Born premature at 25 weeks, she weighed just 1lb 15oz and was so fragile her heartbroken parents weren’t even able to touch or hold her.

The situation was so dire that her father was convinced she would die despite the best efforts of intensive care staff.

But now the beaming tot has defied the odds to celebrate her first birthday and will spend Father’s Day outside hospital with proud dad Michael O’Kane, mum Ali and brother Finn.

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However, the optician from Fairmilehead hasn’t forgotten the role charity Simpsons Special Care Babies played in his daughter’s recovery.

And now the 34-year-old and colleagues from Specsavers have voted to give £3800 from the firm’s charity fund to pay for a crucial Vapotherm as a way of saying thanks.

An identical machine at the Simpsons Intensive Care Unit at Edinburgh Royal Infirmary played a vital role in Sophie’s amazing recovery.

Michael said: “Simpsons Special Care Babies is a fantastic charity which is on our doorstep and I can personally vouch for the incredible work it carries out.

“We sometimes take the NHS for granted but I have to say the debt of gratitude you feel is massive when someone takes such good care of you in an impossible, overwhelming situation.

“Staff took my infant daughter, who I was sure would die, and counselled my wife and I, guided us, befriended us and rescued our child. I will always be grateful to the neonatal unit and its staff and see them as the sole reason we are able to say we have a daughter.

“At Specsavers in Morningside I have had a tremendous amount of support from my colleagues through what has been a difficult and emotional time.

“The business has been thriving and we like to share our success by supporting local community groups and charities every year. At the end of this year myself and my staff unanimously agreed that this was the charity we wanted to direct our latest charity donation to.”

Simpsons Special Care Babies was set up in the 1980s by parents and friends who had babies in the Simpsons Intensive Care Unit, and remains volunteer-run.

The charity is dedicated to supporting the care of premature or sick newborn babies and their parents within the ERI.

Simpsons secretary Gill Mitchell said: “We were overwhelmed when Michael got in touch. This charity relies on donations and is run by a team of people who value the incredible work of the unit’s staff, who give help and hope to families. It’s great to hear this kind of praise for the unit and we extend our thanks to Specsavers for this thoughtful and generous contribution.”

Michael O’Kane relives a gruelling year for his family and thanks the medics who saved the life of his baby when she was born 14 weeks early

I WAS testing a child’s eyes the day my life was turned upside down.

A colleague came to the door and asked for a private word – I assumed he wanted advice on a difficult ophthalmic condition so I was shocked to be told there was a family emergency.

My wife Ali, then 24 weeks pregnant, was bleeding and needed to go to hospital urgently.

I apologetically explained to my patient’s mother that I would have to leave due to unforeseen circumstances and she was wonderfully understanding. The message started to sink in as I rushed home to collect my wife and take her to the hospital for scans – we were both terrified as we knew the implications.

After some time in hospital Ali was allowed home. But we remained worried.

A few days later I got a call from Ali who was in a panic – she was crying and told me her waters had broken.

I was shopping but just dropped my basket and ran to the car. To add to the stress, a truck had overturned its load on the bypass so I got stuck in a huge traffic jam and there was nothing I could do about it.

I couldn’t even call any of our parents to help as Ali’s were on holiday abroad and mine live in Ireland.

When I eventually reached her she was with our two-year-old son Finn and he was being so sweet, comforting her with his favourite toy.

We held each other and cuddled Finn, and were terrified nothing was ever going to be the same again.

Everyone was amazing and rallied around to help us. Our neighbour offered to look after Finn while we were at the hospital. Ali’s aunt drove up from Dumfries and my mum got on the first available flight to look after Finn. Ali’s parents cut their holiday short.

The hospital staff were amazing. Because of the intensity of the situation and risks involved with having such a premature baby, they put Ali in a separate room so I could be with her. I slept at the hospital for three nights. We talked, cried and hugged.

The doctors and nurses started to prepare for our baby’s early arrival, administering steroids to help the lungs, antibiotics to prevent infection and magnesium sulphate to help with brain function.

Within two days of being admitted – with Ali now at 25 weeks – her contractions became very strong and we knew it was imminent.

The doctors had stressed how important each day in the womb was for increasing our baby’s survival so we wished, prayed and hoped for every extra hour we could.

At 7.06am on June 12 our daughter Sophie Alison O’Kane was born – looking tiny but perfect at just 1lb 15oz. Because she needed help to breathe we weren’t able to cuddle or even touch her. She was placed in a special plastic bag to insulate her, because the fat within the skin hadn’t yet formed and she would have lost too much heat to survive. She was taken to the neonatal ward to be looked after by specialists.

Sophie went straight into intensive care – she was put on a ventilator and medicine was administered directly into her umbilical cord via intravenous lines and she was fed via a method called TPN (Total Parenteral Nutrition). We placed our faith in the doctors and quickly learned this was the best strategy for Sophie’s survival.

Our parents came to visit and were amazed at how perfect little Sophie looked.

When Ali was allowed to come home we felt sad we couldn’t take Sophie with us, but the doctors reassured us that she was in the best place, so we went home and had cake to celebrate Sophie’s arrival and Ali getting home. It felt really strange to celebrate without having Sophie at home with us, though.

Sophie remained in neonatal intensive care for just over seven weeks, then a high-dependency unit for four weeks, followed by the special care unit for two weeks. She was there over Father’s Day and my birthday.

During this time the staff were amazing. They wrote me a Father’s Day card on Sophie’s behalf. They were empathetic and understood our journey, ensuring they were there for us during our toughest times. Even the patient that I was forced to run out on bought Sophie a lovely toy giraffe!

Because Sophie was born before her lungs had formed properly she needed special medicines to allow the tissues to absorb oxygen and needed to be ventilated – it’s quite a forceful action and it caused scarring of her lungs, ultimately causing chronic lung disease.

This caused a lot of tense moments as she wasn’t absorbing enough oxygen for her needs, so doctors raised the concentration of oxygen she was receiving and she needed a few blood transfusions. The ventilator masks obscured Sophie’s face and left her looking really ill – that was the thing that shocked the family most when they came to visit as it had to be fitted tight, leaving a big dent on her fragile nose and misshaping her face. It was clear to us that she was uncomfortable and that was difficult to watch.

There were three Vapotherm machines on the ward which provided similar treatment but were much less invasive, and when one became available Sophie was changed to this. We could finally see Sophie’s face and it elevated our hopes and left us so much more positive.

In truth, at that stage, nothing had changed in terms of the treatment she was receiving – it was just her comfort and our perception of how ill the other mask made her look. But the Vapotherm let us see her progression, her face started to reform and the indents in her face started to fill out. It gave us hope and strength and we celebrated her progress much more.

Sophie is now almost a year old. She came home on oxygen but at present doesn’t require it, which we’re delighted with. She is smiling and cooing and seems to be developing well.

She will have regular reviews at the developmental clinic over the next two years to make sure her development stays on track.

Reflecting on our experience, I wanted to repay the ward and the staff in the neonatal unit.

You know you pay your taxes for the service you receive in the NHS, but I have to say the debt of gratitude you feel is massive when someone takes care of you in an impossible, overwhelming situation – they took our daughter who we were sure would die, and counselled us, guided us, befriended us, and rescued our child. I will always be grateful to the neonatal unit and its staff, and see them as the sole reason we are able to say we have a daughter.

My colleagues in Specsavers Morningside have been very supportive. The business has been thriving and we like to share our success by supporting local community groups and charities every year. The staff unanimously agreed that we wanted to direct our latest charity donation to Simpsons Special Care Babies. The donation of £3800 is enough to purchase the equipment that made a huge difference to Sophie – another Vapotherm. I hope it helps other parents and infants to feel the same relief and encouragement we experienced.