March is the month to celebrate mothers. Ballymurphy mum Seph Ní Mhealláin tells Local Women about the only gift that she wants for her big day.
EAt the start of each new day, Seph Ní Mhealláin wonders if it will be the day that will oﬀ er her precious son a chance at life.
Little Dáithí MacGabhann, from west Belfast, was born with a congenital heart defect and is on the waiting list for a life-saving transplant.
So, while 23-year-old Seph gets on with being a mum, every moment of every day, every waking hour, she is consumed by a dread that the phone call will never come.
“Dáithí might look well but he is actually dying,” she said.
“He needs this new heart, he won’t survive without it.
“He’s my best friend and the thought that he might not be around, it’s too much to bear.
“It’s always there in the back of my mind, every time the phone rings I jump in case it’s the organ donor people ringing to tell us they have found a heart.
“You just never switch off .”
Two-year-old Dáithí was born on October 21, 2016.
Even before he arrived into the world, Seph and her husband, 28-year-old Máirtín, knew Dáithí faced a struggle to survive.
Seph continued: “We found out at the 20-week anomaly scan.
“You usually go to the scan to fi nd out if you’re having a boy or a girl and the last thing you expect is to be told that there’s something wrong with your baby’s heart.
“It was towards the end of the scan, the radiographer had checked his brain, the size of his head and all the other normal things, and it was when she went to check his heart that her face fell.
“I just happened to be looking at her at the time and I noticed the expression on her face completely change, then she said she had to go and fi nd a doctor.
“I just said to Máirtín, ‘there’s something desperately wrong with the baby’s heart.’
“From that moment on, our lives were turned upside down.”
Seph and Máirtín were told their son had hypoplastic left heart syndrome – a condition where the left side of the heart cannot pump oxygen-rich blood to the body properly - and he would need at least three operations to mend the defect.
So, the couple braced themselves for some tough times ahead.
However, they could never imagine the agony they would have to endure.
Moments after Dáithí arrived into the world, he was whisked away to the neonatal intensive care unit.
“I only got to hold him for a few seconds after he was born before they took him away,” said Seph.
Within a matter of days, he was transferred to the Evalina London Children’s Hospital by air ambulance.
“It was such a scary experience, we didn’t really know what was going to happen,” said Seph.
And when he was just four-days-old, Dáithí had his fi rst open heart surgery.
Watching their delicate newborn baby go for the operation was understandably traumatic for both Seph and Máirtín, with doctors warning there was a signifi cant risk the tot may not survive.
“It was really tough, we just had to watch him being put under and give him a kiss on the head and put all our faith in the surgeons,” said Seph.
“There are no words to describe it, I feel sick to the stomach even thinking about it now.”
Dáithí was in theatre for seven hours and doctors advised the couple to leave the hospital.
“They told us to go out and try to do something to take our minds off it,” said Seph.
“We actually ended up going to Seaworld, it was so surreal, and looking back now it doesn’t seem real.”
As it turned out, little Dáithí faced a desperate battle to survive.
His heart began to fail and doctors had to put him on a special machine but warned Seph and Máirtín he could only stay on it for fi ve days because of the risks that go with it, including stroke.
Dáithí was on the machine for six days, but just as doctors were about to give up, he opened his eyes.
He went on to have further surgery from which he recovered well and he was fi nally allowed to go home.
Seph and Máirtín fi nally began to allow themselves to feel hopeful about the future.
But their optimism was shattered in June last year.
Doctors told them they were unable to repair a leak in Dáithí’s heart, meaning the life-saving third surgery he required was no longer an option.
Seph continued: “From the moment we found out about Dáithí’s condition, we knew there was always a chance that he would need a heart transplant, particularly in his teenage years.
“We had that thought in our minds, although it was something we didn’t want to think about.
“He is quite stable at the moment, he’s doing well, he is up and running about and you probably wouldn’t know about his heart condition if it wasn’t for his wee tube.
“He’s doing great, he has a wee cough that won’t go away but we just have to go along with that because there isn’t anything we can do about it.
“The cardiologists are happy with how things are going, but ultimately he does need a heart transplant.
“It could be in a couple of days, or next week, or a few months and his heart will deteriorate and that’s when we will get really desperate.
“Worrying about it takes up every single minute of the day, he’s my best friend, my pride and joy and I have a terrible fear of losing him, of not having him around.
“Thankfully he is only two and he’s totally oblivious to all of it, he’s so happy in spite of everything.
“Through all of this we have spoken to families who have made the really brave decision to donate their loved one’s organs and the common theme for all of them is the comfort that comes from knowing someone else has been saved.
“We’re desperate for as many people as possible to sign up to the NHS Organ Donor register and improve the chance of Dáithí getting a new heart.”
“Getting his transplant would be a life-changing gift for all of us.”
To sign up to the NHS Organ Donor register, log on to www.organdonation.nhs.uk
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