A 12-year-old girl’s life was saved by heart transplant after she nearly died of a rare disease.
Kayleigh Llewellyn of Seaham, County Durham, fell ill about three months ago when she woke up one morning because she was having trouble breathing.
Doctors diagnosed her with cardiomyopathy and, to the shock of Kayleigh’s parents, warned that a heart transplant was her only chance of survival.
The disease causes the walls of the heart to become thick or stretched, which can make it harder for the heart to pump blood. It can lead to heart failure or sudden death.
Kayleigh was hooked up to hospital machines that pumped blood around her body, giving her heart a rest while she waited for a donor.
After about six weeks in intensive care, Kayleigh – who was in a coma for some time – was told she would get a new heart in time for Christmas.
Kayleigh is now recovering from surgery at Freeman Hospital in Newcastle and is excited to start exercising again.
Kayleigh Llewellyn of Seaham, County Durham, was rescued by a miraculous heart transplant after nearly dying from a rare heart muscle disease
Kayleigh fell ill about three months ago when she woke up one morning because she was having trouble breathing. She has been fit and healthy so far (pictured in her soccer set)
Doctors told Kayleigh’s parents, Shaun Sidney, 50, and Sonia Llewellyn, 41, that a heart transplant was the only thing Kayleigh could survive. They were depicted together several years ago
Her father, Shaun Sidney, 50, said “words are not enough” to express his gratitude to the mourning family of the donor.
He said, “The whole ordeal was our worst nightmare, but now Kayleigh has received the gift of life. It is the best Christmas gift we can ever wish for. ‘
Mr. Sidney also praised the significant change to the Organ Donation Act, which will enter into force in 2020.
All adults in England and Scotland are listed as organ donors upon death unless they have made a decision to opt out.
Kayleigh, an avid footballer, told The Daily mirror: “I want to thank the donor’s family. I wouldn’t have been here today without them. ‘
Kayleigh’s parents, Mr. Sidney, a timber yard, and Sonia Llewellyn, 41, worried about their daughter one morning three months ago.
She woke up with breathing difficulties and took the day off from school – but her parents thought it was her asthma, the Sunderland Echo reports.
The next day she had chest pain. Other signs of cardiomyopathy include ankle swelling and dizziness.
Kayleigh was taken to Sunderland Royal Hospital the same day after her parents called.
Her heart rate was found to be abnormally high, and tests showed she had cardiomyopathy.
The disease is a common cause of sudden cardiac arrest in young people, according to the National Heart, Lung and Blood Institute.
It cannot be cured. Treatment is usually designed to slow progression. Medicines and lifestyle changes are considered before surgery.
In Kayleigh’s case, doctors said she urgently needed a heart transplant to save her life.
Since then, she has been cared for in the specialist heart department of Freeman Hospital, with her host mother at her side all the time.
Kayleigh had a temporary ventricular device on the left side of her heart, which allows blood to continue pumping for patients with a damaged heart.
The right side was linked to an ECMO machine that pumped blood outside her body and supplied oxygen, which allowed her to rest her heart and lungs.
After about six weeks in intensive care, Kayleigh received news that she would have a new heart in time for Christmas. She is depicted at Freeman Hospital, Newcastle
Kayleigh, who is now recovering in the hospital, and her family would like to thank her donor’s grieving family. Mr Sidney said that “words are not enough” to express his gratitude
After a month in intensive care, Kayleigh was placed on the list of urgent transplants in November, accelerating her to receive a heart.
On the transplant waiting list, it may take several days, months, or even years for the donor to be received. About one in six people don’t get the heart transplant they badly need.
WHAT IS CARDIOMYOPATHY?
Cardiomyopathy is a disease of the heart muscle that affects the size, shape and structure.
The condition is usually inherited.
The three main types of cardiomyopathy are:
- Hypertrophic – heart wall is thickened
- Deleted – heart muscle is stretched and thin
- Arrhythmogenic right ventricle – heart muscle cells cannot be held together
All of these types of cardiomyopathy affect the heart’s ability to pump blood efficiently throughout the body.
They can also affect the way electrical signals make the organ beat.
However, there is no cure, in most cases people’s quality or longevity is not affected.
Therapies can include medication, heart rhythm normalization, pacemakers and, rarely, cardiac surgery or transplants.
Source: British Heart Foundation
Kayleigh was rushed to the theater after a suitable donor heart was identified after just a week.
However, the operation had to be canceled because “bad weather” delayed the organ’s arrival, worsening the organ’s condition.
Surgeons put Kayleigh into a coma to rest her body with a mechanical heart pump fitted to take over the work of one or both sides of the damaged heart.
A week later, another heart donor was identified that was the perfect match for Kayleigh. She was driven into the theater and the operation was a success.
Mr Sidney, a father of two, who had a heart tattooed on his chest to mark the event, wanted to thank the family who donated the organ.
He said, “We hope to meet them someday to thank you, the greatest thank you I could ever give. But even then words are not enough.
“We appreciate everything they went through … The joy they gave is absolutely phenomenal.”
Kayleigh will be home for the next few days and looks forward to raising awareness about organ donation and the opt-out system that will come into effect next year.
Adults are listed as organ donors when they die, unless they are not. However, families are still given the ‘final say’ as to whether their family member’s organs can be taken.
Families are therefore encouraged to discuss their wishes with their loved ones.
Mr. Sidney said that the family never thought about organ donation until their own daughter fell ill and “turned their lives upside down.”
There are no definitive figures on how many people have cardiomyopathy because some people live with the condition but have no symptoms.
However, it is estimated that around 160,000 people in the UK have cardiomyopathy. The CDC believes as many as one of every 500 adults in the U.S. have the disease.
Cardiomyopathy mainly affects adults and is rarely diagnosed in children. About 30,000 children in the U.S. have cardiomyopathy, according to the Children’s Cardiomyopathy Foundation.
The new opt-out system is also known as Max and Keira’s law. Max Johnson’s life was saved after receiving a heart transplant in August 2017, following the death of Keira Ball, also nine.
WHAT IS THE CHANGE OF ORGAN DONATION?
From spring 2020, the organ donation in England will switch to an ‘opt-out’ system. The law will enter into force in Scotland in the fall of 2020.
All adults are deemed to have consented to organ donation upon death unless they have decided not to donate.
This means that adults still have a choice if they don’t want to donate their organs, but they have to record this decision.
It hopes to increase the number of families who agree to have their family members’ organs harvested.
This is because the family is still involved in an organ donation decision when a family member dies. They still have the right to revoke any decision made by the deceased.
It is important to inform family and friends about your decision to improve organ donation numbers.
Some groups are excluded from the opt-out system, including people who do not have the mental capacity to understand the new arrangements and take the necessary measures, visitors to England and people who have lived in England less than 12 months before their death.
For people under the age of 18, the situation does not change, in which case the family is asked to make the decision.