'Case of sit, wait hope and pray Nickey will get transplant'
Nicola Higgins from Athy, Co Kildare, with baby Nickey, nine months, who is awaiting a double lung transplant. Picture: Moya Nolan
Nicola Higgins and her family are living in limbo as they anxiously await a double-lung transplant for baby Nickey.
The Cork woman gave birth to her seventh child last May but it wasn't until two months ago she was able to bring her now 10-month-old home.
Having previously had six children with no issues, Ms Higgins, who is originally from Aghada, had no reason to suspect there was anything different about this pregnancy.
That all changed when she went for her 20-week scan, which identified Nickey had a cleft lip which can be an indicator of other health issues.
He was then screened for Down syndrome, Edwards’ syndrome, and Patau’s syndrome. Although at this time, he tested negative for Down syndrome, he was diagnosed with it post-birth.
Less than two months after the scan — on May 3, 2023 — Nickey was born via emergency C-section weighing just 985 grams.
Having been born at 27 weeks, Nickey was brought straight to ICU and Ms Higgins did not get to see her son until the early hours of the following day.
Although he was breathing unaided for the first two minutes of his life, doctors had to intubate him for seven days.
"Nickey was born with a lot of things. He was born with chronic lung disease, pulmonary hypertension, pulmonary stenosis, hypothyroidism, the cleft lip and palate, an atrial septal defect in his heart in between the two chambers," Ms Higgins explained.
When he was born, he had a grade two bleed to the brain, something Ms Higgins and her partner, Nickey Sr, were not aware of until he had been transferred to Crumlin children's hospital on July 25 and they met with his team of doctors.
The health issues seemed to be coming in waves, when they would get their heads around one thing, the next wasn't far off.
At two weeks old, Nickey contracted covid-19 while in intensive care and was put into isolation for four weeks.
"We nearly lost him," said Ms Higgins, noting there have been at least three occasions when they felt as though baby Nickey would not pull through.
While in Crumlin, Ms Higgins said Nickey got aspiration pneumonia and once again, they feared they would lose their baby boy.
Nickey had been due to go home at the end of August but due to this setback, he remained in Crumlin hospital until January of this year.
The aspiration pneumonia also resulted in Nickey being put on oxygen 24/7.
Currently, Nickey is on the list to receive a double-lung transplant and is considered a 'red alert' patient.
The transplant would address the most serious issues the boy faces — chronic lung disease, pulmonary hypertension, and pulmonary stenosis.
In a matter of weeks, they would be able to take Nickey off oxygen and his quality of life would dramatically improve.
An air ambulance will be on standby to pick up Nickey to immediately bring him to Birmingham once they receive the call that donor lungs are available.
"If he doesn't get it, I will be lucky to see Nickey at two years of age above ground," said Ms Higgins.
The family are all trained in CPR, with the knowledge that should something happen, a quick response is vital to Nickey's wellbeing.
They also know if Nickey's condition worsens, there may not be much that can be done.
"It's on his discharge papers. If he deteriorates, he is only for resuscitation. They won't intervene."
He may be small but Nickey has proved that he is stronger than many expect.
On more than one occasion, he has proved his doctors and specialists wrong.
"He has a title, our little warrior. He has beaten the odds of the doctors. They were even afraid to put a PEG in his belly because they didn't think he would wake up."
Ms Higgins recalls a Sunday in the hospital when a doctor came to Nickey's room and told her her baby had three weeks left to live.
"Every day we went to Dublin, it was fight, fight, fight. And just to hear 'oh, bring him home for palliative care', no."
Nickey faces daily struggles due to his various health issues but he is a very happy child.
"He loves a cuddle and he loves the chats. He'll look straight up into your face and chat away to you," his mother said.
"The other day in Crumlin, I think he knew the professor because when he walked in Nickey just started giving out to him straight away."
His six siblings dote on him and always look out for him, even his two-year-old and four-year-old brothers.
"As soon as he sees them in the morning the arms are going up looking for a cuddle."
Having a large family has been a help in the months since Nickey was born, with all of the children pitching in to help.
The two eldest even gave up full-time jobs to help look after their baby brother.
But the constant worry and stress take their toll on everybody.
Nicholas has his mother to lean on and in the evenings, when the children have gone to bed, Ms Higgins rings her mother in Cork or her sisters.
The extended family has never spent time with Nickey except when he was in the hospital. He was christened in the hospital with just his parents and the chaplain in attendance.
"I'm at home 24 hours, seven days a week, you might as well say," she said.
Any small cold or cough could be detrimental to Nickey so the family does not have people over to the house.
There is little support to be found as they play the waiting game to see if and when Nickey gets his transplant.
Perhaps it is no surprise to learn that Ms Higgins has at times entered into a negative place mentally.
"I'm going home and I'm saying, what have I done wrong? What have I done for baby Nickey to be like this?"
It has been a hard year for the family and, as Ms Higgins said, they are just getting by with what they have.
On top of worrying about baby Nickey, finances have become another stress factor for the family.
A specific chair that would help with Nickey's additional needs has been recommended by his occupational therapist but it is something people can wait years for and by the time they get it their child has outgrown it.
The chair and any accessories it requires will cost a few thousand euros and that is just one of the expenses arising from Nickey's complex needs.
Family and friends have rallied around and one well-known Cork man was straight on the case once he heard about baby Nickey's situation.
Mark O'Sullivan, aka Fanta, got in touch with Ms Higgins' mother when she had shared a post about Nickey on her social media.
When he was caught up on the situation, Fanta — as he has done countless times before — set about organising a fundraiser.
An Abba night will held at the Midleton Park Hotel on June 8, with tickets going on sale in a couple of weeks.
The family has also set up a GoFundMe page 'Support Nickey Junior with his Journey'. Anyone who would like to donate to help Nickey can do so here.
Other fundraisers are in the works but for now, it's a case of "sit and wait, hope and pray".
CONNECT WITH US TODAY
Be the first to know the latest news and updates
