Cork mum: Our son underwent surgery for rare condition - now we want to help others

DOUGLAS woman Tara Lenihan is doing The Echo Women’s Mini Marathon this Sunday, for Temple Street Children’s Hospital, after her son Kye received support and great care there.

The six-year-old underwent surgery for a rare condition, craniosynostosis.

“Kye was born in CUMH in 2016 and from day one his head seemed to be an irregular shape,” says Tara.

“Any time we brought it up with our GP and Public Health nurse appointments, they just kept telling us that it was fine and he was just on the higher percentile.”

CONCERNS ABOUT THEIR SON

However, Tara and her husband, Terence, were worried about their son.

“He didn’t meet the milestones you would expect and at eight months old he was referred for physio as he was still unable to hold his head up or sit up unaided,” says Tara.

“Again, this was put down to weak muscles and he was discharged after three months as they had become stronger.

“By the end of 2017, you could feel a ridge in the back of his head and the shape was very noticeable,” says Tara.

“We were eventually referred to a specialist in CUH by our PHN and from there we were referred to Dr Murray.”

The trio were getting places.

“Once we heard it was possible that Kye had craniosynostosis, I found a Facebook group in Ireland that was set up by another mother to help support parents on this journey,” says Tara.

“Seeing the photos of other families for the first time and reading their stories was terrifying and we were still in a bit of denial that he had the condition.”

Further medical investigation was carried out.

“In December, 2018, we had our first consultation with Dr Murray where Kye was diagnosed with Lambdoid Craniosynotosis,” says Tara.

“Not only did he have a rare condition but he had a rare form of the condition too. 

"We were given lots of information and a follow up appointment was made. As Terence was unable to get time off work I had gone to the appointment with my mother-in-law.”

Tara was on a journey to help her son.

“On the trip home it really hit me that we were now on this scary journey and what may lay ahead for our bubbly little boy.”

SURGERY LAY AHEAD

Time moved on.

“Six months later, at our next meeting it was decided that surgery was needed,” says Tara.

“Due to Covid hitting, our pre-operation meeting didn’t take place until March, 2021, and we had one final meeting in April, two weeks before the surgery. During this time we set up a Facebook page called Kyes Cranio Journey to help raise awareness for both the condition and the amazing work the team in Temple Street do,” says Tara.

Everyone rallied round to help the little boy.

“Our family also set up a gofundme page to help us with the travel up and down to Dublin, the hotel stay, etc,” says Tara.

“They held a danceathon and we also had a raffle with donations from our amazing community. These included a Cork GAA jersey, a signed Cork City jersey, hampers and vouchers. The support from family and friends was amazing,” says Tara.

Reality struck.

“The two weeks of isolation before surgery were very tough as it gave us too much time to think about what Kye was going to go through and the risks at stake,” says Tara.

The couple gave the operation serious thought.

“I think we both nearly backed out of it so many times but we knew deep down that we were doing the right thing,” says Tara.

The scary journey began.

“The trip up the day before was the longest trip we’ve made,” says Tara.

“I don’t think either of us slept a wink. As it was during Covid only parents were allowed and even then it was only one at a time. So it really was just the three of us.

“Signing the consent form that said there might be a chance he won’t make it out of surgery was heartbreaking and one of the worst feelings ever. Kye went down for surgery at 10am on May 12, 2021, and I’ll never forget hearing him scream my name, begging me not to let the doctor take him away,” says Tara.

“We spent the day in the hotel room which was only a two-minute walk from the hospital, waiting to get the phone call to say he was out of surgery.”

It was a worrying waiting game for Tara and Terence.

“The later it got, the more worried we became,” says Tara. “We finally got a call at 6pm to say he was out and doing OK.

“Terence went to meet Kye after the surgery and his first words on the phone to me were, ‘he looks so fragile’.”

Everyone wanted to see Kye get well.

“Our family asked for photos and video calls but we decided not to because we didn’t want Kye to see himself and we also didn’t want our families to get a shock,” says Tara.

“He spent five days in Temple Street as he couldn’t keep anything down and he was unable to walk for the first 48 hours. We had his hair cut tight but nothing prepares you for seeing your child bald with drains, etc.”

Kye bounced back after surgery.

“He finally got strong enough to be discharged and we spent that night in Dublin before heading home,” says Tara.

What did Kye say when he saw himself after the surgery?

“When we got to the hotel room he saw himself for the first time and his reaction was; ‘Oh I’m bald!’

“When our family finally video called, they all cried.”

A BUMP IN ROAD TO RECOVERY

Kye’s brave journey wasn’t over yet.

“About a month after surgery, Kye’s skull got infected and as the condition is so rare and nobody knows about it, CUH sent us to Temple Street,” says Tara.

“He had to undergo another small surgery and spent another few days in hospital. He spent his sixth birthday having he surgery so he wasn’t impressed!”

Kye made a full recovery.

“He is a year post op now and he is absolutely flying!” says Tara.

“He started senior infants this year and he’s also starting football.”

Kye is a brave little warrior.

“At first he got bullied for his scar and he wore a hat all the time,” says Tara.

“But then his daddy got scars shaved into his hairstyle and now he is so proud of his scar and he tells people that the doctor cracked his head open!”

SAYING THANK YOU - AND SUPPORTING OTHERS

Tara is on a mission.

“We are doing the mini-marathon to raise awareness for the amazing team in Temple Street who always had a smile, a hug and just provided us with support in the toughest circumstances during Covid,” says Tara.

“We are also doing it to raise awareness for Craniosynostosis. We want people to know that these little warriors really go through a tough time and that they really have earned their scars!

“Without the support from the team in Temple Street and the Cranio Ireland Parents support group, we really would have struggled,” says Tara.

“We hope that by sharing our story we might be able to help just one family.”

The family got good advice.

“The best piece of advice we got was ‘remember that we’re doing this for them not to them’.”

Craniosynostosis is a rare condition that involves the premature fusion of one or more of the sutures of the skull. It affects 1 in 2,500 and there is currently only one specialist team in Ireland, Dr Dylan Murray in Temple Street Children’s Hospital.

HOW TO TAKE PART IN THE ECHO WOMEN’S MINI MARATHON

The event takes place on September 18, starting at Centre Park Road. You can register at www.echolive.ie/minimarathon/