Monday 20 November 2017

Meet Ben and Emma - miracle twins born at 23 weeks mark their first Holy Communion against the odds

Ben and Emma Kavanagh were born at 23 weeks six days, weighing 770g and 660g respectively.
Ben and Emma Kavanagh were born at 23 weeks six days, weighing 770g and 660g respectively.
Patricia Murphy

Patricia Murphy

Ben and Emma Kavanagh beamed at the camera like any other children on their Communion Day earlier this month, but for their mum and dad it was a milestone they feared they'd never see.

The miracle twins were born by emergency Caesarean at 23 weeks and six days in 2008 and their parents Paula and Niall Kavanagh were told that the chance of the pair surviving were slim.

Critically ill, Ben and Emma weighed just 770g and 660g when they were born in Dublin's Rotunda Hospital after mum Paula went into early labour at the beginning of her sixth month of pregnancy.

Speaking to Independent.ie, Paula who lives in Kilcullen, Co Kildare said: "I had the perfect pregnancy up until that point. I was actually in the social welfare office registering my maternity leave when I began to experience pains.

Ben weighed just 770g at birth.
Ben weighed just 770g at birth.

"I went into the Rotunda later that evening and they kept me overnight for observation.

"In the morning I walked down to my X-ray and I was chatting away to the radiographer. It was all so normal but as she began to scan my uterus, she just froze. The change in her was so sudden. She said to me 'I need to get Heidi', who was the head of radiography.

"They told me that my cervix was fully dilated."

Doctors made the decision that the twins had to be delivered if they had any hope of surviving, and the babies were born by emergency section 25 minutes later; Ben first, followed by his sister.

"My husband was outside speaking to the consultant, and everyone was insistent that they would not cut until he was there. He had been asking about their chance of surviving this, and when he came back in he was as white as a ghost. I asked him what the consultant had said and he told me that everything was going to be fine. I said, 'You're lying to me'. He told me the truth - if they got through the next 48 hours it would a miracle. Even if they did, they would have about a 10pc chance at living a normal life.

"Ben came out first and my lasting memory of that moment was seeing his red hair, his tiny ginger head like a tennis ball, the same colour as my husband's.

"After Emma came out I just had this feeling of emptiness," she said.

The babies were rushed to the Rotunda's Neonatal Intensive Care Unit where medical staff worked tirelessly to keep them alive. However, Paula said it was hours before she had the courage to visit them. She was persuaded by her older sisters who proved an incredible support.

Miracle twins Ben and Emma celebrate their First Holy Communion earlier this month
Miracle twins Ben and Emma celebrate their First Holy Communion earlier this month

"I didn't realise you could have babies at that stage and they could have a chance at surviving.

"I was lucky to have my two older sisters at that time because I was so worried about seeing the babies. I was worried that they weren't formed and terrified about how tiny they would be. I didn't think I'd be able to see them."

"Luckily, my sister put it into perspective for me. She said, 'Paula, they're your children. They're perfect."

"When I went down to see them I remember just thinking how tiny they were, perfect little things.

Ben and Emma Kavanagh with their family
Ben and Emma Kavanagh with their family

"It's quite scary because they have no fat, and their eyes are still fused shut. I don't think they even had fingernails," said Paula, who was already mum to 16-month-old Will when the twins were born.

Infection is the most threatening risk to premature babies, particularly those born as early as Ben and Emma. Had the twins been born two days earlier, they would not have been strong enough to have been intubated. Doctors told Paula and Niall that the longer the babies lived without an infection, the better their chances were.

Ben, however, became extremely ill ten days after he was born as a bacteria called staphylococcus targeted his hip joint. The baby developed septicemia, and the infection ate away at his delicate hip tissue, which remains one of his main battles today. Emma became seriously ill and "almost died" thirty days after she was born as an infection attacked her bowels.

The siblings battled through several life-threatening procedures throughout their time in high-dependency care in both the Rotunda and in Crumlin Children's Hospital, including a procedure to close the valves between their hearts and lungs, as well as eye-sight saving laser surgery. However, their cranial scans remained clear throughout, and today Ben and Emma are at the same cognitive level as their peers.

Paula and Niall were able to take Emma home on August 21, the date the babies were due had they been carried to term. Ben was allowed home a week later, but it was not smooth sailing as both babies had a number of prominent health problems, as expected when children are born so prematurely.

"When Ben came home, he was still in a harness for his hip. His leg was forever dislocating.

Emma weighed just 660g at birth
Emma weighed just 660g at birth

"In the NICU, they are in this routine, and you try your best to stick to it. We were getting 20 minutes sleep at a time at one point. One time I was so tired I ended up putting Emma in on top of Ben in the cot. The screams that came out of them!

"While Emma was getting on well I could tell by looking at Ben he wasn't heading for an okay life. There was so many problems, he was having trouble swallowing, and I would just look into his eyes and he wasn't checked in."

A big believer in alternative medicine, Paula and Niall had the twins undergo CranioSacral Therapy, a hands-on treatment which is believed to enhance the body's natural capacity for healing. The couple brought the twins twice a week to Ger Swords in Upledger Clinic in Naas, and the mum said he helped Ben in ways she could never have imagined.

"He was a miracle worker and I really believe he changed their lives. It's a therapy that releases trauma and I believe it rewired Ben's brain.

"It also changed my attitude. I had been envisioning Ben's future in a wheelchair and I told Ger that I could now see him on a rugby pitch. He gave me one of the best pieces of advice he could have ever given me. He said 'Paula, that's great, but why not look at Ben now see him as he is, and don't put any expectations on him'. That sort of became my parenting philosophy from that moment onwards.

"From that moment I decided they were going to be okay and I chose to look at them in a different way, in the present. I do feel this attitude shaped my children into who they are today," she said.

Paula said the twins dramatic arrival had an impact on her oldest son Will, and said it is difficult to be the older sibling of twins, particularly ones who were so sick.

"When the twins were born, Will was just a baby. People were so amazing to us, and helped us out so much. We got into a routine. On Tuesdays I would stay with Will at my sister's in Howth. My sisters were so good to him, they got his his own little cot and made him his own little place for when he stayed.

"Will is a little bit introverted. Obviously the twins' birth had an impact on him. It's definitely harder to be the older siblings of twins because they are so close but they do get on well."

Ben and Emma celebrated their ninth birthday on May 8, much to the delight of their family and friends who gathered together to celebrate their First Holy Communion.

Ben continues to suffer with hip problems as a result of the infection he battled when he was a newborn, and one of his legs is longer than the other. The siblings also live with Sensory Processing Disorder, a condition in which the brain has trouble receiving and responding to information and one that many children who were born prematurely live with.

However, the miracle twins are thriving and enjoying second class in Scoil Bhríde in Kilcullen.

"Ben loves to read, Roald Dahl is his favourite. Last week he dressed up as Boy for school. He is a real inventor, he loves Lego and is one of the most charismatic people I know. He's so popular and has a great group of friends. It was quite funny because he came home the other week and said 'Mum, everyone knows me but I don't know a lot of them'. He makes us laugh.

"Emma is so bright too, but she's a real girly girl, unlike me. She's obsessed at the minute with Jojo bows. For someone so young, she has such a keen sense of what's fashionable and Emma dreams of being a singer."

Offering advice to other parents who find themselves in the same frightening situation she was once in, Paula urged them to live in the present.

"Appreciate them as they are now. I wish someone had just said that to me from day one. To try and stop worrying about what they'll be like 20 years from now. Try not to despair. Even at our most scary moments, Niall and I, we always always hoped. We never gave up.

"Finally, a wise doctor once told me something that I think helped me retain some of my sanity. Never, ever Google anything."

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