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Six-week-old baby is fighting for life waiting for heart transplant after suffering two cardiac arrests due to rare condition

A SIX-week-old baby is fighting for life, desperate for a heart transplant after a rare defect caused him to have two cardiac arrests.

Little Charlie Douthewaite is the youngest patient on the transplant list and has already endured nine surgeries and more than 20 blood transfusions.

 Little Charlie was born with a congenital heart defect that means the left side of his heart didn't form properlyMercury Press Little Charlie was born with a congenital heart defect that means the left side of his heart didn’t form properly

Tracie Wright, 30, and Steven Douthewaite, 32, were given the devastating news their baby was suffering from a rare heart defect at their 20-week scan.

After considering an abortion, the parents-of-three were adamant that their son deserved a chance at life.

Charlie was fitted with a shunt to control blood flow in his heart when he was just three days old.

But four days later Charlie suffered his first cardiac arrest and has been on life support ever since.

 Charlie has endured nine surgeries and 20 blood transfusionsMercury Press Charlie has endured nine surgeries and 20 blood transfusions  He is the youngest patient on the transplant listMercury Press He is the youngest patient on the transplant list

Despite several surgeries to mend his tiny heart Tracie and Steven were told Charlie needs a new heart three weeks ago.

Tracie, of Fenham, Newcastle, said: “When we found out Charlie had hypoplastic left heart syndrome (HLHS) at his 20-week scan we were absolutely devastated.

“We had never even heard of it before so we didn’t know what to think.

“We were in total shock, especially after having two other pregnancies without any complications.

 Charlie, pictured with mum Tracie, will not be allowed home until he has a new heartMercury Press Charlie, pictured with mum Tracie, will not be allowed home until he has a new heart  Tracie and her husband Steven learned about their baby's heart defect during a routine scanMercury Press Tracie and her husband Steven learned about their baby’s heart defect during a routine scan

“We thought about a termination but we were adamant that Charlie deserved a chance to live and a chance to fight.

“Charlie is such a little fighter, we are so proud of him. He has endured more in such a short time than most adults could.”

After Charlie’s first cardiac arrest it took medics half an hour to bring him back.

Tracie has shared pictures of her tiny boy covered in tubes and surrounded by medical equipment in the hope it raises awareness about the importance of organ donation.

“Finding out Charlie would need a new heart was horrendous. I just didn’t want to believe it. It’s sickening to think another baby will have to lose their life to keep our baby alive,” she said.

 Charlie was fitted with a shunt to control blood flow through his heart when he was just three days oldMercury Press Charlie was fitted with a shunt to control blood flow through his heart when he was just three days old

“But whoever that baby is will be giving the most amazing gift, the gift of life to our Charlie.

“Charlie is our whole world and no words could ever describe how incredibly grateful we would be to the family who agrees to let him have their baby’s heart.”

HLHS is a congenital heart disease that affects the normal flow of blood through the heart and the formation of the left side of the heart.

It is a congenital heart defect, meaning it is present at birth.

Shortly after receiving Charlie’s devastating diagnosis, Tracie developed obstetric cholestasis – a pregnancy related liver condition that can be toxic to babies if they are taken to full term.

What is Hypoplastic left heart syndrome?

Hypoplastic left heart syndrome is a condition where the left lower pumping chamber (left ventricle) of the heart does not develop properly so is much smaller than usual.

The valve between the left ventricle and the upper left filling chamber (left atrium) is often closed or very small.

And the main blood vessel that carries blood from the heart to the rest of the body, called the aorta, is also smaller than usual.

This means that the heart is unable to pump blood around the body effectively.

Hypoplastic left heart syndrome is a form of congenital heart disease, meaning it develops before the baby is born.

The cause is unknown.

Symptoms:
Babies born with this condition are seriously ill as soon as they are born.

Symptoms include:

  • greyish/blue skin
  • difficulty breathing
  • poor feeding
  • cold hands and feet
  • unusually drowsy and inactive
  • weak pulse

Without surgery  hypoplastic left heart syndrome is fatal, usually within the first few weeks of life.

With treatment many babies survive but may experience other complications like heart rhythm abnormalities fluid build-up on the lungs and blood clots later in life.

 

At 38 weeks, Tracie’s was induced and Charlie was born via emergency caesarean on October 2 at the Royal Victoria Infirmary, Newcastle.

Despite looking “perfect” Charlie’s condition was so severe that he had a hole in his heart between two chambers and underdeveloped valves that were small and leaking.

He will not be allowed home until he has a new heart.

Tracie travels a two hour round trip to Charlie’s bedside everyday while her and Steven try to keep things normal for their other children Ryan, seven, and Jamie, 10.

“Going through labour was so scary, I was absolutely terrified. Charlie’s heart rate kept dropping with my contractions so I had to have an emergency caesarean.

 Charlie had his first surgery when he was nine days oldMercury Press Charlie had his first surgery when he was nine days old  Tracie is urging people to register to be organ donorsMercury Press Tracie is urging people to register to be organ donors

“When he came, he had to be taken away straight away. It was nice hearing him cry and knowing he was here and alive but awful not being able to hold him. That’s all any mother wants to do.

“Steven and I didn’t get to hold him for the first time until the morning before he went in for his first surgery.

“He was absolutely stunning. He’s so beautiful, you never would imagine there was anything wrong with him. Outside he’s perfect, it’s just his heart that is broken.”

Anthony Clarkson, assistant director of organ donation for NHS Blood and Transplant, said: “Sadly there is a shortage of donated organs and around three people die a day in need of a transplant.

“Hearts need to be matched by size and a very young child like Charlie will only be able to receive a heart from a child whose family agree to donate.

“We urge everyone to please join the NHS Organ Donor Register and then tell your family you want to donate. A few words can make an extraordinary difference.”

HOW YOU CAN SAVE A LIFE

Organ donation is giving an organ or tissue to help someone who needs a transplant.

Transplants can save or greatly enhance the lives of other people.

But this relies on donors and their families agreeing to donate their organ or tissue.

There are two types of organ donations; when a person is living and when a person has died.

In death, most organs can be donated.

While a donor is still living, they can choose to donate a kidney, a small section of their liver, discarded bone from a hip or knee replacement and also their amniotic membrane.

Doctors can only use organs and tissues from a registered donor with the families consent after they die.

So if you are a donor, make sure you have discussed your wishes with family and friends.

To register to donate your organs visit organdonation.nhs.uk

 

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