A FOUR-month-old baby girl who has been diagnosed with an extremely rare genetic condition has been highlighting the plight of youngsters on both sides of the Atlantic.

Little Penelope Pickup was recovering in hospital from an invasive operation to by-pass her failing lungs when her parents were told she had congenital hyperinsulism.

MORE TOP STORIES:

The condition affects just one-in-50,000 children worldwide and causes her body to produce too much insulin.

The youngster’s picture was shown at an international Congenital Hyperinsulinism Family Conference, at The Children’s Hospital of Phil-adelphia in America, where people affected by the disease came together to raise awareness.

Penelope’s dad Lee Pickup, 27, said: “I can’t really put it into words, but I would not wish it on anybody.

Lancashire Telegraph:

“It was always in our minds that she could die.

“Seeing her in the incubator with tubes and wires in her. You don’t expect it to happen.

“Congenital hyperinsulism affects just one in 50,000 children worldwide. It's very, very rare."

The youngster has been taken to Royal Blackburn Hospital in an ambulance three times since July, and could need a further operation to remove her pancreas if her condition does not improve.

Born by emergency caesarean section on Friday, June 6, Penelope was 11 days past her due date.

She had to be placed in an intensive care incubator after it was discovered she had inhaled meconium, her first bowel movement, while in the womb, making it difficult for her to breathe independently.

Doctors also diagnosed persistent pulmonary hypertension, a linked condition which means blood does not flow by the lungs, resulting in low oxygen levels.

Mum Gianna, a note-taker at Blackburn College, said: “When I was able to go and see her, I struggled to comprehend the severity of the situation.

“These were all words to me, all I knew was that my baby was ‘dangerously ill’ in the doctor’s own words.”

Less than 24 hours after Penelope was born, the family of Church Street, Great Harwood were told a specialist team from Glenfield Heart Centre, in Leicester were on the way to Burnley General Hospital to operate.

Retail worker Lee, said: “If they could not get a bed there, the doctors said she would not have made it.

“It was horrible.”

Specialist medics performed a half-hour long procedure on Penelope, using a rare treatment called ECMO - Extracorporeal membrane oxygenation - which allowed mechanical lungs to take over breathing for her.

The procedure involves two tubes, the width of a pen, being inserted into her neck connecting straight to her heart. One tube took out the deoxygenated blood, where it is oxygenated externally from the body and the other puts the oxygenated blood back in. This allows the lungs to rest.

Gianna, 28, said: “Any parent who has had a similar experience will be able to confirm that there are simply no words to describe the feeling you get once you are told that all the options have been exhausted.

“Her only chance of survival depended solely on receiving ECMO.

“All we managed to find out was that it was very invasive and was known as a ‘last resort’ treatment.”

The life or death operation was successful and Penelope was transferred to the specialist unit in Leicester to be closely monitored.

After a day and a half, doctors operated to remove the ECMO before she was flown back to Burnley General Hospital by helicopter.

Lee said: “Because her bloods were being monitored, they picked up low blood sugar.

“It took them another two weeks to diagnose her with congenital hyperinsulism (CHI) because the condition is so rare.

“Luckily, she responded well to her medication and has only had a couple of ‘hypos’, although these are extremely dangerous low blood sugar episodes.“ CHI is the opposite of diabetes, when the pancreas doesn’t produce enough insulin, and requires Lee and Gianna to test Penelope’s blood three times a day.

Lee added: “It’s enough to go through the ECMO, but then to have another rare syndrome is unlucky.

“But then we are lucky at the same time that she has pulled through both.

“She has extremely long hair for a baby, she looks like one of the Beatles - It’s a side effect of one of the medicines she is on.”

The family are now trying to raise £1,500 for the Heart Link - the charity that supported them through Penelope’s treatment.

Gianna said: “Every day we are thankful for ECMO, but especially to Glenfield Hospital, Heart Link, and all the staff.

“We are extremely lucky she survived and there are but a few babies in the country that have had ECMO, and very few with CHI, so it makes Penelope literally one in a million.”

Penelope’s parents now plan to raise money at Penelope's Naming Day party in November where they will ask for donations instead of presents.

Anyone wanting to donate should visit www.justgiving.com/penelope-pickup.