Meet the adorable baby girl with rare growth condition causing long locks and stature of three-year-old
Meet adorable baby Penelope who has a rare growth condition which means she is as big as a toddler – despite just celebrating her FIRST birthday.
Penelope Pickup, from Blackburn, Lancashire, was born at a healthy weight of 8lb 3oz, but four-months later she was diagnosed with Beckwith Wiedemann syndrome – a growth disorder which causes large body size.
The condition has also caused Penelope’s hair to grow at a rapid rate, and by six-months-old, she had to start using hair conditioner.
Penelope, the first child of Gianna, 29, and Lee, 28, often get comments from strangers about her luscious locks and surprising size.
She is now the size of a three-year-old despite only being 13-months-old.
Penelope’s parents are now raising awareness for the unusual condition which should start to slow down as she gets older – adults with this condition are not unusually tall.
Gianna said: “We get stopped all of the time because of Penelope’s outstanding hair, and she loves it.
“She likes nothing more than putting on a cheeky smile and getting admired. We just embrace it.
“We’ve been told she would probably have been tall regardless of the syndrome, because her dad Lee is 6ft 6″.”
Penelope’s syndrome came as a shock after what seemed to be a healthy pregnancy, and it took four months for doctors to diagnose.
Gianna said: “I’d had a lovely pregnancy but the labour didn’t progress, so before I knew it in June I was in theatre within 20 minutes of a check-up for caesarean section.
“It was awful because as soon as she was born she was rushed down to the NICU I couldn’t hug her for four days.
“It was so upsetting not being able to give my baby girl a cuddle!”
Initially, Penelope was diagnosed with a life-threatening condition called meconium aspiration syndrome, which is when a baby inhales their first stool shortly before or during birth.
It meant she had to go on an ECMO, a type of life support, which acts as a lung bypass at Glenfield hospital in Leicester.
Gianna said: “The ECMO at saved her life in many ways. It also picked up her hyperinsulinism where the body produces too much insulin.
“But most of all, the hyperinsulinism made doctors do a test to see if she needed a pancreas removal, which babies with it often do need.
“Thankfully, Penelope didn’t, but it did mean that they picked up on her Beckwith Wiedemann syndrome, which they probably wouldn’t have done otherwise!
“It was because they noticed that her abdominal organs were enlarged.”
Whilst Beckwith Wiedemann syndrome is rare in itself – as it affects only one in 13,700 new born babies – Gianna is yet to meet another baby with both the syndrome and hyperinsulinism at the same time.
Gianna said: “If they hadn’t picked up on the BWS syndrome when they did, Penelope wouldn’t be receiving the vital kidney scans that she currently has every 12 weeks, and blood tests every 6 weeks.
“As she gets older, she hates the blood tests more and more.
“She wasn’t too bad at first but now we have to pin her down for them to get a blood test from her.
“The tests are necessary because with the BWS syndrome there is an increased chance of childhood cancer, particularly a kidney tumour.
“We’ve been told however that the screening will stop when she is eight years old, if the tests remain positive.
“By the time she’s eight, the chances of her tumour will diminish and her body size should start evening out, so all we can do is keep our fingers crossed.”
Gianna is now expecting their second child a baby boy – who is due in eight days.
Gianna said: “The whole thing with Penelope was really scary for us – but Penelope is so brave, we couldn’t be happier or more proud of her.
“She is just a happy baby, and we try to treat her just like a normal baby and stay positive for her.
“She is a real bright spark and is developmentally ahead of her targets.
“We’re sure that she will make a wonderful baby sister!”