‘All we want now is time with our little fighter’: Parents plead with doctors not to give up on cherished baby daughter

THE parents of a tiny baby battling a rare condition yesterday begged doctors to give them as long as possible together.

Eleven-week-old Willow Scanlan was born with serious heart defects and the incurable chromosomal condition Edwards’ syndrome.

Her parents David and Gina were given the option of living with her in a hospice or taking her home to die. They decided to take her home.

And so far she has defied the odds, even fighting back from a potentially lethal virus.

But little Willow needs surgery to correct a hole in her heart and defects in two of its valves.

It is a procedure surgeons do not routinely offer to children with the condition because sufferers have a very short life expectancy and they are unable to justify the risks involved.

But Willow’s parents say their research has shown that some do live into adulthood.

Now they are begging medical teams not to give up on their cherished “wee fighter”.

The couple, who live near Fyvie in Aberdeenshire with their son Jude, three, said: “Willow has so far proved the doctors wrong at every turn. She is definitely a fighter.

“It is as if she is demanding to live. She deserves a chance.”

The family’s nightmare began 20 weeks into Gina’s pregnancy when a routine scan indicated a possible problem. Further scans were carried out at Royal Aberdeen Children’s Hospital.

Doctors initially thought Willow had a heart defect called truncus arteriosus, which would have required surgery in the first week of her life.

They then determined that Willow had problems with her aortic and pulmonary valves, in addition to the hole in the heart previously diagnosed, all of which her parents said they were told was largely “fixable”. But medics also feared Willow’s problem could be linked to a genetic condition.

The family were referred to specialists at the Royal Hospital for Children in Glasgow where Willow was delivered by caesarean section on November 3, weighing 4lb 6oz.

She was tested for chromosomal abnormalities and a week later the couple received the results. It was then that their world fell apart.

David recalled: “The consultant told us Willow had Edwards’ syndrome – the most severe type. Most babies do not make it out of the womb.

“You are expecting a baby to go into surgery for major heart surgery with a 90% chance of surviving and a week later you get the diagnosis for Edwards which they say is terminal.

“It was like dodging a bullet then stepping on a landmine. We had been preparing ourselves for the worst. Then we had the immense relief of knowing her condition was survivable.

“To be hit with this was devastating. We were told she hadn’t got long to live but they couldn’t tell us how long.”

Willow was taken home on November 17 and everything was going well. But on December 11 – David’s 40th birthday – the unthinkable happened.

While he and Jude were visiting Santa’s grotto 45 minutes from home, Willow stopped breathing. She had contracted a common virus.

Gina, 43, said: “I heard a strange gurgling sound and when I went to her Moses basket she was not breathing and was pale.

“When I picked her up everything just flopped. I was shouting her name, I was terrified but I knew if I panicked she would die.

“I started resuscitating her and dialled 999 with the other hand, putting them on speaker.

“When I was blowing into her mouth I saw her chest rising and then she let out a cry. I cannot describe the relief, and I could hear it in the voice of woman at the end of the phone. She told me to keep her upright and keep her awake.”

Willow and her mum were blue-lighted to Aberdeen Royal Infirmary.

David said: “The doctors explained what would happen if we let her stop breathing; that she would not struggle or fight, that she would run out of oxygen and that would be it.

“If the Edwards had caused this, and she was suffering because of it, we might have let her go. But it was just a common cold. She should not die because of that.”

Willow was airlifted to the Glasgow hospital and placed in intensive care. Amazingly, she survived the ordeal and returned home on January 3. She continues to do well.

David said: “We have no complaint against the medical teams. They are caring professionals who do an amazing job. We are extremely grateful.

“This is not about apportioning blame but about thinking about how things can be done better.

“Every conversation we have had with medical practitioners about Edwards’ syndrome focuses on end-of-life care, rather than fixing the other conditions that are fixable.

“Willow is a content baby. We have even had our first smiles. She has shown amazing resilience.

“Our consultant has told us he will put her case to a panel of cardiologists who together will decide, when she is older and stronger, whether they will operate on her.

“When that time comes we will be pleading with them to give her a chance. She deserves it.”