By Alyce Collins
THIS INSPIRING toddler survived MENINGTIS FOUR TIMES before he was nine months old, but now his mum is speaking out to show that brain damage doesn’t define her fighter of a son.
Full-time carer, Jodie Johnson (30) from Leigh, United Kingdom, had hoped her twin pregnancy in 2017 would be as blissful as her previous pregnancy to son Nova in 2016, however an early delivery at 26 weeks was a sign of what was to come for the new mum-of-three.
Jodie and her husband Matthew (28) found out they were pregnant with twins at just six weeks when two heartbeats were found, and labour soon started at only 26-weeks.
As Jodie was taken to hospital in an ambulance to Bolton Hospital, half an hour away, the twins’ heart rates began to slow down and doctors knew an emergency caesarean was required. The twins were delivered on September 24, 2017, Lola and Luca, weighing just 2lbs each.
Lola exceeded all expectations as she continually progressed in the Neonatal Intensive Care Unit (NICU) without any hurdles. Her twin brother, Luca, however faced many problems as he fought for his life while remaining in the NICU for the first three months of his life.
At only six weeks old, Luca contracted sepsis and had to be given morphine for two weeks to ease the pain, before having his first run in with bacterial meningitis at 11 weeks old. Luca went on to endure meningitis three more times, leaving him with long-term brain damage.
Luca has periventricular leukomalacia (PVL) and cerebral palsy spastic diplegia, severely affecting his development. Jodie spent months questioning why someone was so badly trying to take her son away from her, after nearly losing him on countless occasions.
Jodie and Matthew have been warned that Luca may never sit up, walk or talk, but they are sharing their story to show that a brain injury doesn’t define him, but his determination to progress is what defines their inspiring little hero.
“We found out in May 2017 that I was pregnant, but I was getting pains in my lower abdomen, so I had an early scan to check if it was all okay, at which point they found two heartbeats,” said Jodie.
“This was the start of a difficult pregnancy because with two babies it became more and more draining each day.
“A week before I went into labour I was working from home and Nova was at home with me. Being pregnant with twins, having a toddler and trying to work was very stressful.
“The following Sunday I went into labour which I think was down to the stress of the previous week and I think I overworked myself.
“I went to Wigan Hospital thinking they would stop my contractions with treatments to prevent labour because they don’t deal with women under 28-weeks and I was only 26-weeks, and with twins it was a higher risk pregnancy already.
“As my contractions became closer together, we were made aware of the decision that it was necessary to have me transferred to another hospital as Wigan wasn’t equipped to deliver pregnancies under 28 weeks.
“By the time they found me a different hospital to be seen in, which was Bolton, I then started to get contractions even closer together. By the time we arrived it was too late and the babies’ heart rates were dropping so they needed to do an emergency c-section.
“Within the hour, Luca and Lola were delivered safely and the staff were truly amazing.
“Luca has had to fight since the day he was born because he had life threatening infections and he was ventilated for two weeks.
“At just six weeks old he got sepsis. He should have still been in my belly at that time, but we were very close to losing him.
“Then at 11 weeks old he caught bacterial meningitis before being on antibiotics for three weeks. We got to take him home from the NICU on Christmas Day 2017, weighing just 4lb 10oz.
“We thought we were over the worst but little did we know that in March 2018 he would be back in hospital for his second bout of bacterial meningitis, so he needed antibiotics to recover.
“Only a few weeks later, in May things took another turn for the worst and we found ourselves back in hospital to hear the news that he had meningitis again. It’s rare to have it once, never mind three times.
“It was during this incident when we first began to notice that something seemed to be affecting Luca. We noticed changes in his movements, and it seemed to be really taking it out of him.
“They did a round of blood tests which showed he has a low immune system. Luca was then referred to the immunology department in Manchester hospital, but getting the MRI and blood tests can take months.
“By June of that year my boy got ill again. I thought that it couldn’t surely have been the same cause again. But we took him to the hospital to be seen to once again only to be told the bad news yet again that he had meningitis for a fourth time, and he was only nine months old.
“He just kept deteriorating – he had a temperature of 40 degrees, his oxygen levels were low, and he was lethargic. I just kept thinking that someone was trying to take my baby away, but what had we done for our baby to deserve this?”
Jodie admits that her family’s life has changed drastically since welcoming the twins prematurely, although in a bittersweet sense she feels that it has changed them for the better and made them stronger as a family.
Sharing their story on Instagram has helped Jodie show that brain damage doesn’t have to turn a family’s world upside down, as she has already seen how much progress Luca has made.
“It was the scariest thing I have ever gone through and it wasn’t just once we went through it,” Jodie said.
“It felt like a nightmare that never ended, but all I could do was hope that some sort of miracle would happen.
“The blood tests carried out in the immunology department showed that Luca’s vaccinations didn’t take so he had to have them all repeated. He also had a meningitis booster which you’d normally have at 15 years old.
“He then had an MRI and CT which showed Luca’s brain damage, PVL which is when the brain doesn’t send signals to the muscles, and cerebral palsy spastic diplegia which causes stiffness to the muscles.
“We were in so much shock despite suspecting something was wrong, yet we held on to a little bit of hope that he was just delayed due to being premature.
“We needed a bit of time to process things because nothing will ever prepare you for being told your boy has brain damage. We just don’t know what or how his future will play out.
“I still get emotional now, but it’s Luca who keeps us all going with his big smile. He’s the happiest boy you will ever meet.
“He has physio every week to build his strength, so he may never sit up, walk or talk but with plenty of physio and dedication I believe anything is possible. I have every faith in him.
“We won’t know what his potential is until he’s older, but he’s still learning to grasp things and hold his head up. He has a very long road ahead of him, but I think 2019 is Luca’s year.
“I want to show the world what an amazing little boy he is and what an inspiration he will be to others. Even though he has brain damage, it doesn’t stop him and it’s not the end of the world.”
You can follow Luca’s journey by visiting @bgtwins_and_a_toddler.