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VIDEO: Darcie’s story - the beautiful baby who will never be able to speak
WHEN baby Darcie was born there was no screaming or crying and it was immediately apparent something was terribly wrong.
New parents Lydia Willoughby, 22, and Ben Warman, 24, who live together in Christchurch, were terrified bystanders in the moments after their daughter was being delivered 14 weeks ago.
Darcie suffers with bilateral vocal cord palsy, a rare condition which makes breathing difficult and means both her vocal cords are paralysed, and, as such, will never be able to talk.
"We had no idea during the pregnancy that there was something wrong," said Lydia.
"But when she was first born she did not cry."
Instead a chilling high pitched noise emanated from Darcie as she desperately gasped for breath, before turning blue.
Medics acted quickly and worked to keep her windpipe open. She was then transferred from Poole Hospital to the high dependency unit at Southampton General.
Lydia and Ben said they were left feeling helpless, watching their new baby lying in hospital with tubes in her nose, as experts sought a diagnosis.
The pair spent every moment they could with Darcie, staying by her side day and night so she would never be alone.
Three weeks after the birth the new parents were taken aside by doctors who delivered the news that at least one of Darcie's vocal cords was paralysed and that she may need to undergo a tracheotomy - a surgical procedure which opens the trachea and involves the insertion of a tracheostomy tube to provide an artificial airway.
"They just came out and explained it to us - here is what is going on and here is all the information you need," added Lydia.
As Darcie turned six weeks old, Darcie's parents were told both her vocal cords were paralysed and despite her fragility, a tracheotomy was essential.
This development meant the young couple had to undergo specialist training so they could prepare to care for Darcie by themselves.
This included learning resuscitation techniques, such as mouth-to-tracheostomy tube instead of mouth-to-mouth, as well as being taught how to use equipment to suction respiratory secretions.
Lydia said she is keen to raise awareness of the condition and help people in the community understand what is happening when, inevitably, she has to suction Darcie, sometimes as she goes for a stroll down the road.
She added: “The reaction from people that know us has been absolutely amazing.
“It is more the reaction from people that don't know us when we are out that is the most difficult part.
“People stare. We have a rather large pushchair for her as we have a lot of equipment to take out - and as soon as she needs the suction we have to do it."
The family are now settling back at home and starting to enjoy spending time with Darcie, who the first time parents said is already developing a cheeky and smiley personality.
“Obviously, usually when a child cries you know what it is that they are wanting,” added Lydia.
“There will always be light at the end of the tunnel. This time nine weeks ago we thought we would never have her home.”
What is next?
Darcie will never be able to speak and as such parents Lydia and Ben will have to learn sign language to help her communicate.
Ben said, although this is daunting, it could mean Darcie developing communication skills more quickly than other children.
Other than bilateral vocal cord palsy, Darcie is healthy and her parents anticipate that she will be able to do many normal things children like to do and cope at a mainstream school.
They have also taken to social media, joining Facebook groups to link up with other parents going through similar experiences.
Lydia added: “There are so many people all over the world and all over the UK that are going through this and they are there to support you.”
The tracheostomy tube
This invasive procedure was performed on Darcie when she was aged just six weeks old.
Surgeons cut into Darcie’s neck to create an opening at the front of the windpipe. This procedure is called a tracheotomy. The resulting hole is called a tracheostomy.
The tracheostomy tube allows Darcie to breathe independently without the use of her nose or mouth.
Lydia and Ben have to use the opening to remove build ups of respiratory secretions.
The machine makes a loud droning sound and the couple admitted that they are often stared at by passers-by as they perform the procedure.
It will be possible for Darcie to lead an active lifestyle in the future, but she has to be watched closely as she is already developing the habit of touching and removing the tube herself.
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