Sunday 23 October 2016

'We both totally fell apart' - Couple on losing their 20-month-old daughter

Claire McNeilly

Published 27/08/2016 | 11:30

Rodney and Sinead Beggs. Photo: Facebook
Rodney and Sinead Beggs. Photo: Facebook

Driving isn't easy when both driver and passenger are in shock - and in tears.

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Rodney and Sinead Beggs will never forget March 8, and they'll certainly never forget Mary.

Wonderful, beautiful little Mary, who enriched their lives for just 20 precious months.

The toddler's brave battle with Cloves Syndrome - a one in 50 million disorder for which there is no known cure - ended six months ago today when, as her devastated father puts it, they had to hand their daughter back to God.

"I believe that He could have changed the situation around, but I also believe that He has a plan," said Rodney.

"It breaks my heart [he breaks down in tears at this point] that his plan was not to keep Mary because she was the most amazing thing ever to happen to me.

"But, at the same time, I have to thank God for giving her to us in the first place. She changed me forever."

Bereaved parents may have differing beliefs, but what unites them is the certainty that there can be no greater pain than that of losing a child.

And that's one of the reasons why Rodney (34) and his 36-year-old wife set up the Mary Beggs Tribute fund, which has already raised €23,460 to help people plunged into the grief that, six months on, is still all-too-real for them.

The couple married in September 2013 and, three months later, Sinead fell pregnant.

Everything was fine at the 12-week scan, but the heartache began when they returned to Antrim Area Hospital for another routine ultrasound at 20 weeks.

"The sonographer said the ventricles in the baby's brain looked enlarged and that she needed to refer us to the Royal Victoria Hospital," recalled businessman Rodney.

"We were worried; it was our first baby together. We didn't want to wait, so we booked an appointment for a comprehensive scan at a private clinic in Belfast that evening."

In just 45 minutes their lives were to change irrevocably.

"The consultant told us we needed to plan for our child to be born with extensive brain damage," said Rodney.

"We got outside, then we both totally fell apart. It was horrible.

"Sinead broke down in my arms. We somehow got into the car. I drove up the road a bit. Then we pulled in. We talked. We cried. It was horrendous.

"I carried on driving a bit more. We stopped again. It probably took us about three times longer than normal to make it home."

Rodney said that although he never felt angry, he did question why this had happened to him and Sinead, who has two boys - Tiarnan (10) and Johnny (seven) - from a previous marriage.

Quickly, their lives became a series of hospital appointments and private consultations but, coming from a deeply religious family, Rodney's faith never faltered - even at the worst moment of his life.

"The only hope I had was faith," he said.

"We were told throughout the pregnancy that we wouldn't know precisely how bad the damage was but that the brain hadn't developed properly.

"We were given the option of a termination around 20 weeks but never considered that. We weren't burying our heads in the sand, but we believed Mary would be okay."

Rodney, proprietor of The Music Rooms, an instrument and music workshop business, said that Sinead stopped work as a driving instructor when she realised what was ahead.

"She was going through the emotional rollercoaster of being pregnant and then this landed on top of us. She had two boys to worry about as well," he said.

"I was out working, trying to keep the money coming in. It put a lot of pressure on us as a couple. We had good days and bad. It wasn't easy."

They chose the name Mary well before she was born because "it gave us something nice to talk about".

The scans, however, remained pessimistic, and doctors became so concerned about the size of the unborn baby's head they decided to induce Sinead seven weeks early.

Musician Rodney was by his wife's side when Mary entered the world via caesarian section on June 20, 2014.

"I kept thinking 'is she going to cry? Is she going to breathe?'" he recalled.

"When I look back I can honestly say I've never been more scared... while at the same time trying to be strong for Sinead."

The infant's eventual screams helped allay Rodney's fears, as did the fact that his daughter looked like any other newborn baby.

"She was beautiful," he said.

"She didn't have any of the defects we were told to worry about. She had fluid in her brain but, although her head was bigger than average, it wasn't monstrously big.

"She started to feed very quickly too. To be honest, for that first week - even though she was hooked up to machines - it was as if our prayers had been answered."

Within a few days, Mary was diagnosed with Hemimegalencephaly, a rare neurological condition in which one side of the brain is abnormally larger than the other.

And when she was just two weeks old, she had to undergo an operation so that fluid could be drained from her brain.

"That was really tough," Rodney said.

"We didn't know how this condition would express itself but one of the big symptoms of it is epilepsy - and when she was just three weeks old Mary suffered her first seizure."

From that moment on, the little girl went on to have 50 or 60 seizures a day, some lasting up to 15 minutes.

Having spent six weeks in neo-natal and another fortnight in the Paul Ward at the Royal, she was two months old before she was discharged.

"That was lovely; we weren't sure we were ever going to get her home," said Rodney.

"She did most things that babies do and at the time it wasn't obvious she wasn't normal."

But Mary's health would soon deteriorate.

"The seizures became more severe, more frequent, more intense," he said.

"There wasn't a month that she didn't spend time in hospital, but at home she had - still has - her own room."

Rodney's stepsons soon realised that Mary, who was registered blind, wasn't normal because their dad Bernard and his new wife Donna had a baby girl, Cara-Rose, around the same time.

"We were very honest with the boys from the start; we told them enough, but not too much to scare them," he said.

"They were always asking questions about why Mary wasn't doing the same things as their other half-sister."

Mary's feeding became a lot more complex from six months old onwards when she stopped taking the bottle and she had to get an operation to allow her to be fed through the stomach via a pump.

"Up until the day she passed away she couldn't hold her head up," said Rodney.

"She only ever laughed once, when she was eight or nine months old. Sinead got that on video, which was very special.

"She smiled from time to time and we've got some great pictures of that.

"I was just very thankful that she was here and I had a wee girl to hold and cuddle and care for."

There was a ray of hope for the Beggs family in July 2015 when Mary went for surgery in England, but the operation had to be halted after surgeons discovered her condition was much worse than previously thought.

"She was losing too much blood and she'd have died then if they'd kept going," Rodney said.

Not only was surgery unable to correct what was wrong, it also marked the beginning of a spate of chest infections that saw Mary in and out of intensive care.

"If she wasn't having breathing problems, she was having seizures; it was a vicious circle," said Rodney.

"We had her home for Christmas and although you wouldn't have said she was well, we didn't believe it would be her last Christmas.

"On New Year's Eve we took her into hospital again; she never really came home after that."

Mary died in her mother's arms, with Rodney by her side, six months ago today - Saturday, February 27 - at the Northern Ireland Children's Hospice in Newtownabbey.

A week and a half prior to that, the consultant offered them the worst decision of their lives: put Mary on life support or let nature take its course.

"I believe Mary had had enough at this stage; she wasn't fighting back like before," said Rodney. "We had to decide if we wanted Mary to go to the hospice, where she dies in our arms, or have her tied up to a machine that we'd have to turn off.

"We totally broke down. We couldn't believe it had come to this. We had to make the decision to let her go."

Through tears, he added: "When she left the Paul Ward, the staff gave her a guard of honour because she'd been there for so long. They were all crying. They knew she wasn't coming back."

When Rodney and Sinead chose to send Mary to the hospice - which had supported their family throughout the toddler's short life - they were acutely aware of how little time she had left.

"I used to bring my guitar in and sing to her," Rodney said.

"That Saturday morning Sinead and I closed the door and we both held her and played some hymns.

"We had a lovely, beautiful morning, just the three of us, and she passed away peacefully in her mum's arms. Around 2.30pm she breathed her last.

"There is no good way to lose your daughter, but the time we spent that morning was precious. I'll never, ever forget it."

A private funeral for Mary was held at the hospice, followed by a burial at Antrim Cemetery on March 2. Over 600 attended the subsequent memorial service at Ballymena Elim Church.

Shortly afterwards the Tribute Fund was set up in the hospice.

"We just wanted to give something back because of how the staff had looked after us," Rodney said.

"The hospice relies solely on donations; it costs £100 a night per child. We couldn't have coped without their support.

"We also couldn't have got through everything without the love and support from our family and friends.

"We know how important the hospice is to people in our situation and we want Mary to live on by helping other people going through struggles with children who are life-limited."

Six months on, Rodney admits he and Sinead are still struggling to cope with their loss.

"After the memorial service I went into her room and lifted her wee blanket.

"I could smell her and I completely broke down and cried for over an hour," he said.

Rodney's faith remains strong, however, and he believes that he and Sinead, whom he describes as "a phenomenal mother", will see Mary again in Heaven.

"I don't remember her as an ill baby," he said.

"I remember her eyes; she had the most beautiful, big blue eyes.

"I just remember her as my wee girl, my wee baby."

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