Baby who defied the odds sparks fundraiser for ‘heroes’ who cared for him

A family are celebrating their ‘miracle baby’ after defying the slim odds of survival after being scanned in the womb as having a number of chromosomal abnormalities.

Tiny Frankie has been hailed as a wonder after surviving the birth, despite her mother Brenda Dorman being offered an abortion at several stages of her complicated pregnancy.

Brenda and her partner Francis Casey learned during their 12-week checkup that their child had little chance of survival, however, the parents were determined to give Frankie every chance.

Brenda, from Coalisland, Co Tyrone, explained: “We discovered Frankie’s abnormalities during our 12 week scan, a major exomphalos was detected.

“The exomphalos is a defect in the abdominal wall where some of his organs are on the outside. In Frankie’s case, it’s his liver and intestines that we know of so far.

The family are now raising funds to help the Children’s Service who cared for Frankie

“Exomphalos is often associated with chromosomal abnormalities like Edwards, Downs and Patau syndrome. In our case, the medical professionals were almost certain that Frankie had Edwards syndrome and we were told that babies Edwards didn’t live very long after birth, so we were often offered the option of stopping treatment.

After undergoing several procedures in which fluid was aspirated from Frankie via Brenda’s stomach, tests came back negative for Edwards, Downs Syndrome and Patau Syndrome, but more complications are to come .

Brenda told Belfast Live: “During our 20-week scan, congenital heart disease was detected along with a VSD heart defect, also known as a hole in the heart.

“We happily continued with the pregnancy despite the odds against us, the fear was unbelievable. We prayed day and night and I think everyone in town who knew about our situation was praying for Frankie.

Despite all the odds, Frankie was born full term on May 17, 2021 at the Royal Maternity Hospital in Belfast, weighing 7lbs 11oz.

He spent 27 days between the neonatal unit and the high dependency unit where Brenda described the care he received as “exceptional”. He was then transferred through the Royal Belfast Hospital for Sick Children.

The mother-of-two admits she and her partner Francis, 38, felt helpless on several occasions during those first few months watching their son’s battle, as well as feeling guilty for being far from their eldest son Conán, 14.

“Frankie spent the majority of his time on the Barbour ward and it became our home for three long months, with a few admissions to the Pediatric Intensive Care Unit (PICU).

“The Barbour ward is extremely busy with a ratio of 3 to 4 children to one nurse. You literally see everything in there, from broken bones, accidents to major surgeries. The team of surgeons, nurses and doctors is fantastic, they are real superheroes in our eyes.

“Picu is a one child nurse and the care is once again exceptional. A daunting service to be honest as you see children fighting for their lives. Every time Frankie was admitted it was so scary he was intubated every time.

“It’s the worst feeling in the world to see your child lying there and you can’t do anything but sit and wait. Your complete trust is in the team.

Brenda continued: “It was a long drive to do every day from Dungannon and it was difficult for all of us, especially our other son Conán. He missed an entire summer with us and I had constant mom guilt for trying and wanting to be in two places at once, but we got through it.

Almost four long months, Frankie was allowed to return home to his family on September 15, 2021, a day Brenda said they will “never forget”.

Today, Frankie is “thriving” at 10 months and overcoming obstacles on a daily basis.

“He’s come such a long way, he’s thriving,” Brenda said.

“We are slowly weaning ourselves off solid foods, which is going well, given that Frankie left the hospital with severe oral aversion and is still suffering from reflux.

“Frankie has also started drinking from a cup and for the past few weeks has only been dependent on oxygen at night.

“A huge step forward and looking back, it’s a step we thought would never be overcome.

Today Frankie
Today, Frankie is ‘thriving’ at 10 months and overcoming obstacles daily

“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 person and loves people who chat with him. He’s in the babbling stage now and it’s great to see.

“He just brought so much joy into our lives,” Brenda added.

Describing the care and support they received during Frankie’s time in hospital as ‘outstanding’, the Dungannon-based family now want to give something back and have embarked on a fundraising mission to two charities close to their hearts.

“We always said during our stay in hospital that we would do something to raise money for the hospital, especially for Barbour Ward. It was our home for months, the nurses became our family and the other parents of sick children our friends. It’s always nice to show appreciation and give a little something back.

“We are fundraising for Helping Hand, which is a charity that covers Children’s Hospital and there are endless possibilities of what they could do with the funding. Maybe fresh decor as I know they were talking about it while we were there, new electronics especially new TVs or maybe iPads/tablets/portable DVD players for the kids while they were there. It can be a long day for a hospitalized child.

Brenda continued: ‘We also raise money for the Children’s Heartbeat Trust, this charity has been amazing to us since Frankie was born. They supported us emotionally and financially during our stay in the hospital.

“The team were always on the other side of the phone and contacted us every week to check on us, which was nice because people can forget about the parents and how they are coping.

“The financial support was a huge help to us as we made daily trips to the hospital from our home in Dungannon.

“We would have suffered a lot without their help, so we will always support them in any way we can.”

The family hold a huge fundraising day on Saturday July 2 where a group of 60 so far climb Slieve Donard for Frankie, followed by a disco fundraiser at Clonoe Hall, Coalisland that evening.

Brenda also urged any other families facing a similar situation they were in to contact them for help and support.

“If there is anyone facing similar complications or living with it, maybe they have a child in NICU or hospital, please contact us if they wish,” she added.

“It’s an emotional rollercoaster and one hell of a mental and physical journey, so it’s nice to have someone to talk to who understands exactly what you’re going through.

“We would also like to thank everyone who has supported us from this 12-week analysis until now. We are eternally grateful for all the prayers, texts and appeals.

“We are so lucky to have Frankie with us today and he is a living miracle. Miracles 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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