Jade’s parents: ‘celebrate our differences’

Pamela Keegan, whose 20-month-old daughter has two very rare medical conditions, is appealing to parents to teach their children to be more accepting of physical differences.

Pamela’s daughter Jade was born with a rare form of spina bifida called encephalocele, as well as craniosynostosis, a condition that causes bone to fuse too early, leading to problems with normal brain and skull development.

It means that Jade will grow up to have apparent physical differences to other children her age, and following a conversation with Jade’s surgeon, Pamela is already worrying about how children will treat Jade when she starts school.

“Jade was born on May 22 in 2018 in Holles Street,” begins Pamela. “She is the only child in Ireland with these two conditions. I actually only know of one other – living in America.”

Jade is Pamela and Terry’s first child, and it wasn’t an easy road from the beginning, as when Pamela was 12 weeks pregnant, she was told that she was losing her daughter.

“I was bleeding and I went in to hospital. It was a Friday and I was examined by a doctor, who told me that I was more than likely losing the baby, but they had no way of confirming it until the following Monday. I was told to go home,

“We didn’t accept that, so we drove up to Holles Street for a scan, and by midnight were told that the baby was fine.

“That’s when I decided to move my care to Holles Street,” says the Ballinea native, who has made Coole her family home for the last three years.

“In one of the scans doctors spotted a growth on the back of Jade’s head that was about the size of a bottle top.

“They kept an eye on it and could see that it wasn’t getting any bigger and they were happy with that.”

Jade was born by section because she had Preeclampsia, and she was moved immediately to the high dependency unit.

“I didn’t get to hold her until 15 hours later,” said Pamela.

Following the Jade’s diagnosis, she had to undergo surgery in Temple Street at just five months old.

“Because of the encephalocele, it meant that the skull didn’t fully form and fuse.

But Jade was also diagnosed with Craniosynostosis, where some of the bones in the skull fused too early.”

Jade also has a number of other conditions including ptosis – drooping eyelids, and – webbing on some of her toes. She was also born with an extra toe on one foot.

Last October, Jade underwent even more surgery, this time to have the ptosis repaired, and in January she underwent more surgery, this time lasting five and a half hours, to repair her skull.

“Jade will have to have a couple of more surgeries, including another for the ptosis, and for the extra digit on her foot. But surgeons have decided not to repair her webbed toes as it would leave her more scarred and it is not worth it.”

And while Jade is recovering well from her surgeries, a new worry for Pamela is how other children will treat Jade because of her differences.

“My main reason for highlighting this is because her surgeon told us to prepare ourselves for Jade being treated differently as she grew up. He told us she would undoubtedly have facial differences.

“That had never entered my head until then. We live in a cruel world now, where everyone is obsessed with selfies, and I’d hate for Jade to be treated differently or in a hurtful way because of her condition.

“What I really want is to make people aware, and especially for parents to teach their children that not everybody looks the same.

“We are all individuals and that should be celebrated rather than ridiculed.”