When Brenda Dorman and Francis Casey were told at their 12 week scan their baby had a low chance of survival due to a number of chromosome abnormalities, they were asked if they wished to terminate the pregnancy
But determined to give their baby the best chance, the Coalisland mum underwent a number of tests and decided to continue with the pregnancy despite the 'odds being stacked' against them.
Brenda explained: "We found out about Frankie's abnormalities at our 12 week scan, an exomphalos major was detected. Exomphalos is an abdominal wall defect where some of his organs are on the outside. In Frankie's case it's his liver and bowel that we know of to date.
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"Exomphalos is often associated with chromosome abnormalities like Edwards, Downs and Patau syndrome. In our case, the medical professionals were almost certain Frankie had Edwards syndrome and we were told Edwards babies don't live very long after birth, therefore we were often offered the option to terminate."
After undergoing multiple procedures in which fluid and was drawn from Frankie via Brenda's stomach, the tests returned negative results for Edwards, Downs syndrome and Patau syndrome, but still further complications lay ahead.
She said: "At our 20-week scan congenital heart disease was detected as well as a VSD heart defect, also known as a hole in the heart.
"We thankfully continued with the pregnancy despite the odds stacked against us, the fear was unbelievable. We prayed day and night and I think everyone in the town that knew about our situation was praying for Frankie."
Despite all the odds, Frankie was born at full term on May 17, 2021 at The Royal Maternity Hospital in Belfast, weighing 7lb 11oz.
He spent 27 days between the Neonatal and High dependency unit where Brenda described the care he received as 'exceptional'. He was then moved across the Royal Belfast Hospital for Sick Children.
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The mum-of-two admits she and partner Francis, 38, felt helpless on a number of occasions during those early months watching their son's battle, as well as feeling guilty about being away from older son Conán, 14.
"Frankie spent the majority of his time on the Barbour ward and it became our home for a long three months, with a few admissions to the Paediatric Intensive Care Unit (PICU).
"The Barbour ward is extremely busy with a ratio of 3-4 kids to one nurse. You literally see it all in there from broken bones, accidents to major surgeries. The team of surgeons, nurses and doctors are fantastic, they're real life superheroes in our eyes.
"Picu is one nurse to one child and the care is again outstanding. A daunting ward to be on if I'm honest as you see kids fighting for their lives. Anytime Frankie was admitted it was so scary, he was intubated every time.
"Its the worst feeling in the world seeing your child lying there and there's nothing you can do except sit back and wait. Your full trust is in the team."
Brenda continued: "It was a long haul travelling up and down from Dungannon every day and it was hard on us all, especially our other son Conán. He missed out on a whole summer with us and I had constant mum guilts for trying and wanting to be in two places at once, but we got through it."
Almost four long months, Frankie was allowed home to his family on September 15, 2021, a day Brenda said they 'will never forget'.
Today, Frankie is 'thriving' at 10 months old and is overcoming obstacles daily.
"He has come such a long way, he's thriving," said Brenda.
"We are slowly weaning onto solid foods which is going well-considering Frankie left the hospital with severe oral aversion and is still bad with reflux.
"Frankie has also started to drink from cup and as of a few weeks ago is now only oxygen-dependent during the night.
"A huge step forward and looking back it's one we thought we would never overcome."
"Frankie, in general, is such a joy. A very well behaved and happy child despite all his abnormalities, medical needs and everything he's been through. He is a real people person and loves people chatting to him. He is at the babbling stage now and it's great to see.
"He has just brought so much joy to our lives, added Brenda.
Describing the care and support they received during Frankie's time in hospital as 'exceptional', the Dungannon based family now want to give something back and have embarked on a fundraising mission for two charities close to their heart.
"We had always said during our hospital stay that we would do something to raise funds for the hospital, especially for Barbour Ward. It was our home for months, the nurses became our family and other parents of sick children our friends. It's always nice to show appreciation and to give a little something back.
"We are fundraising for Helping Hand, which is a charity that covers the Children's hospital and there are endless opportunities for what they could do with the funding. Maybe some fresh decor as I know they were talking about doing this during our stay, some new electronics too especially new TVs or maybe ipads/tablets/ portable dvd players for the kids during their stays. It can be a long day for a child on a hospital ward."
Brenda continued: "We're also raising funds for the Children's Heartbeat Trust, this charity has been incredible to us since Frankie was born. They have supported us emotionally and financially during our hospital stay.
"The team were always on the other side of the phone and contacted us weekly to check in on us, which was lovely as people can forget about the parents and how they are coping.
"The financial support was a huge help to us as we were travelling back and forth daily to the hospital from our home in Dungannon.
"We would have suffered greatly without their help so we will always support them in any way we can."
The family are hosting a huge fundraising day on Saturday, July 2 where a group of 60 people to date are climbing Slieve Donard for Frankie followed by a disco fundraiser in Clonoe hall, Coalisland that night.
Brenda has also urged any other families who are facing a similar situation to the one they found themselves in to reach out to them for help and support.
If there is anyone out there facing similar complications or living with it, maybe they have a child in NICU or hospital, please reach out to us if they want.
"It's an emotional rollercoaster and one hell of a journey mentally and physically so it's nice to have someone to vent to that understands exactly what your going through.
"We also want to thank everyone who has supported us from that 12-week scan to now. We are forever grateful for all the prayers, texts and calls.
"We are so blessed to have Frankie with us today and he is a living miracle. Miracles do happen when you have faith."
If you would like to support 'Frankie's Fight' you can donate via the Just Giving page or follow the Instagram page here.
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