A toddler who survived blood clots in his brain and left arm in the womb which meant the “dead” limb was amputated at 10 days old is celebrating turning one by reaching for the skies on the swings in his local park.
Born by emergency caesarean at 37 weeks on 11 July 2021 with a “bruised and blistered” left arm, after the limb was removed a further MRI scan revealed that Zack Reilly had also suffered a stroke before he was born, causing brain damage that could affect his mobility, muscle control and speech as he develops.
But the beaming boy has adapted brilliantly – celebrating turning one at a family barbecue as well as enjoying his first week at nursery, to the delight of his proud parents Royal Navy assistant careers advisor, Libby Francis, 29, and telecoms engineer, Owen Reilly, 28.
Libby, who lives in Hull, East Yorkshire, said: “For the first few weeks of Zack’s life it felt like one thing after another was going wrong. It was just heartbreaking.”
She added: “But seeing how happy he is now, we are so grateful. We love him to bits and we wouldn’t change him for the world.”
After meeting Owen in the Navy in 2016, Libby enjoyed a smooth pregnancy with Zack until the final weeks.
She said: “We were so excited about finally meeting Zack.
“But I started feeling these sharp cramps in my stomach on July 10 2021, which I thought were contractions.”
Libby added: “We rang the hospital saying we thought it might be contractions, but they said it didn’t sound like I was ready to come in yet.
“Then, the next day they became worse and were so painful I couldn’t feel if he was moving or not, so they said we should come in.”
Monitoring Zack’s heart, the doctors quickly realised something was wrong and sent Libby in for an emergency caesarean on July 11.
While Zack was safely delivered, weighing 6lb 6oz, it was clear something was very wrong with his arm.
Libby said: “It happened so quickly and I was so scared he wouldn’t be okay.
“I was really happy when he was born that they’d got him out in time.
“I hadn’t seen his arm at this point, but Owen had and it looked black and bruised.”
Zack was whisked away to intensive care from Hull Royal Infirmary where he was born after Owen had a brief cuddle and before Libby had even held him, only for them to be told he had suffered a blood clot in the arm.
Libby said: “It was so scary but seeing him for the first time, I just fell in love.
“Touching his hand through the little hole in his incubator was amazing, but I was gutted not to be able to hold him.”
Rushed to Leeds Children’s Hospital overnight, the nervous parents were warned their son may need an amputation.
“It was soul-destroying,” Libby said.
She added: “Just thinking about the challenges he would face and how we were going to bring up a child with one arm was very daunting.”
After a few days of monitoring to give Zack as much chance as possible for his arm to regain some strength, the doctors said it was time to amputate.
Libby said: “They gave him a few days because his arm had regained some colour higher up and they wanted to save as much of it as they could.
“But, eventually, they said they had to amputate because his arm was dead.”
In the end, surgeons removed three quarters of Zack’s left arm, halfway up his bicep.
Libby said: “We were so happy when the surgery was done and that he had made it.
“He was in a lot of pain at first, though, and I had to take myself away at one point, as it was just too upsetting.”
Thankfully, surgery was a success, but then a brain scan a few days later revealed he may also have suffered a stroke in the womb.
Libby said: “The doctors called us into the quiet room and we just knew bad news was coming.
“They said he had damage to his brain due to a suspected clot and while we won’t know exactly how he has been affected until he is older, there is a good chance he might not be able to use some muscles and might not walk and talk.
“I just felt so upset for him. It’s like we were robbed of everything – a normal labour, meeting my child for the first time and then having a healthy, happy family.”
The couple remain eternally grateful to the charity the Sick Children’s Trust, who offered them a “home from home” to stay in opposite the hospital while surgeons did all they could for their boy.
Libby said: “The first night, Owen had to stay in a hotel, while I remained in hospital, but we were worried about how long we could afford this for.
“Thankfully, the Sick Children’s Trust had a room for us in a home across the road from the children’s ward, which was just amazing.
“It meant I could still breastfeed Zack and we could both be near him, as well as taking away the financial worries. And we had the space to cry if we needed to.”
At three weeks old, Zack was allowed home, where he thrived for the first five months, gradually hitting his milestones.
Libby said: “He was only a little behind, but he was smiling and starting to reach for toys with his good arm and started lifting his head.”
She added: “But then at five months, he stopped smiling and over Christmas he started having seizures, which was heartbreaking.”
Taken back to hospital, Zack was diagnosed with a rare type of epilepsy, called infantile spasms – associated with a very abnormal brainwave pattern – and experienced about five episodes of seizures every day over the course of four days.
Thankfully, medication was prescribed to stop them, helping him to get back on track, and while his journey has not been easy, his parents continue to take it all in their stride.
Libby said: “Before Zack was discharged from hospital the first time, we were told he had failed his hearing test. But a few weeks later, doctors confirmed he only had mild hearing loss.”
She added: “It sounds weird but we were so happy, as mild hearing loss meant he could still hear us.
“He has hearing aids to help him, but you can still talk to him and he understands you without them.
“We came home and celebrated, dancing around the kitchen to music together.”
While Zack’s development is slower than would normally be expected at his age, his parents are delighted that he has started nursery and is steadily hitting his targets.
Libby said: “He’s learning his head control and he can’t sit yet but he’s having physio.
“He is quite the cheeky chappie, he is always so happy and just loves to giggle and loves when you make him laugh and makes us laugh too.”
Meanwhile, Zack is never happier than when he is at the local park playing on the swings.
Libby said: “He went on the swings for the first time a few weeks ago and he absolutely loved it.”
She added: “We had a big family barbecue for his first birthday and he loved that too, especially the birthday cake.
“And he was given enough money for us to buy him his very own special needs swing, with extra support to keep him secure.”
Determined to “give back” after all the help and support they received from the Sick Children’s Trust, the couple are now planning to run a marathon and have launched a GoFundMe page hoping to raise £3,500 for the charity.
Owen, said: “When we celebrated Zack’s first birthday we could not believe how far we had come.”
He added: “He can babble a bit now. He can’t crawl but he uses his arm to grab stuff and he is smiling and laughing and reacting to our facial expressions.
“We actually feel like we are a normal family, which is amazing.
“He is a really happy baby and we couldn’t ask for much more.
“He has been through a lot, but to get to where we are now is amazing.”
He added: “What happened to Zack changed my life and having the support of the Sick Children’s Trust made so much difference.”
While neither parent has ever run much further than a few miles, they have managed to get nine friends to join them in tackling the Yorkshire Marathon in October this year.
Owen said: “Everyone has been so amazing and if we can raise some money to help another family like us, then it will all be worth it.”
To support Owen and Libby’s fundraiser visit: https://www.justgiving.com/fundraising/zack-thesickchildrenstrust
To find out more about the Sick Children’s Trust visit: https://www.sickchildrenstrust.org
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