A MUM feels “deceived” by doctors after her “healthy” baby was in fact living with a heart condition that could have killed him.
Katie George, 26, a single mum-of-two, pushed for tests having spotted a symptom while her boy, Cole, breastfed.
PA Real LifeKatie George, 26, spotted signs of a deadly heart condition, having watched her dad suffer with several before his death[/caption]
PA Real LifeCole would sweat when breastfeeding[/caption]
PA Real LifeCole appeared to doctors to be healthy, but his mum knew something was up[/caption]
Thanks to her instincts, Katie was told by a GP that Cole, now two years old, had a heart murmur at four months old.
He was then diagnosed with pulmonary valve stenosis, a type of congenital heart disease, at Great Ormond Street Hospital (GOSH).
Katie, who lives near Canning Town, east London, lost her dad, who she named Cole after, at the age of 14.
He too had a number of heart conditions which helped alert Katie to the signs.
When Katie took Cole home from hospital she noticed he sweated when breastfeeding. He also had a rash, a blue tinge to his lips and a cough.
Katie, who had to see a number of doctors for the diagnosis, says: “I just felt so deceived, I hadn’t even known that my child had this.
“Can you imagine that doctor hadn’t found Cole’s heart murmur? He could be dead.
“No other doctor picked up on it, and she said that murmur would have been there from birth.
“I thought I went home with a healthy baby and he had a heart condition. Can you imagine that wasn’t detected and he actually died?”
Katie was told Cole would need immediate surgery. The complications of severe pulmonary valve stenosis include heart failure.
I just kept thinking, ‘I don’t want him to die’. I’ve only ever had my dad’s experience of a heart condition – and his was traumatising
Katie
She says: “I can’t even describe the feeling of thinking you’ve got a healthy child to (being told), ‘No, they’re going to need life-long cardiac care’.”
She is a now a carer for Cole and her first son Jordan, who was born with the umbilical cord around his neck in November 2017, depriving him of oxygen and resulting in developmental delay.
Jordan, aged six, is “severely disabled”, non-verbal, incontinent, and has a diagnosis of autism and global development delay (GDD).
A life of heart-ache
Compared to the traumatic birth of Jordan, Kate, who is running the London Marathon for British Heart Foundation on April 21, had a “textbook” birth to Cole on March 13 2022.
Kate said: “The doctors kept saying he looks healthy and he’s a healthy boy, he’s a very good weight.
“But had I not kept pushing for them to listen to his chest, he would have ended up dying because I would have had no idea.”
Although Katie said she was told his heart and chest were “all clear” during various check-ups pre and post-birth, she continued to seek answers.
PA Real LifeKatie’s dad, also named Cole, died at 64. He had various heart conditions[/caption]
Cole after his surgeryPA Real Life
Her father had several heart conditions – ischemic heart disease, congestive heart failure, and cardiomegaly, an enlarged heart – and he died aged 64.
After getting a diagnosis for Cole, Katie says: “I just couldn’t believe it, but then on top of that, I just thought, what are the odds?
“I named Cole after my dad who had a heart condition and my baby has a heart condition.”
At the third hospital appointment at GOSH, Katie was told Cole would need surgery to correct his heart valve. Without immediate action, he could go into heart failure.
Cole, who was just one at the time, then underwent the balloon angioplasty on July 3 2023, and Katie said she was “bawling (her) eyes out” throughout the surgery.
“I just I wanted to switch places with him, but I couldn’t,” Katie said.
“I just kept thinking, ‘I don’t want him to die’. That’s all I kept thinking because in my head, I’ve only ever had my dad’s experience of a heart condition – and his was traumatising, I’ll never get over it.”
According to the BHF, a congenital heart condition is an abnormality of the heart that develops in the womb.
Around 12 babies are diagnosed with a congenital heart defect each day in the UK.
Thankfully, Cole’s surgery was a success – and after being told the procedure was down to the BHF, Katie said she wanted to run the 2024 TCS London Marathon and raise funds to “give back”.
“I just thought, I’m going to say thank you to the hospital and I’m going to raise money for (the charity) because they saved my little boy’s life,” she said.
“Growing up, I had my dad with heart issues and now I’ve got my son. My whole life has been cardiac conditions… and that’s why it felt right to want to do this.”
To support Katie, donate to her fundraising page here.
Kate when she was pregnant with ColePA Real Life
PA Real LifeCole is now two-years-old[/caption]
What is pulmonary stenosis?
Pulmonary stenosis is a birth defect of the heart.
The pulmonary valve doesn’t grow as it should in a baby during pregnancy.
The pulmonary valve connects the right ventricle to the pulmonary artery. It normally has three flaps that allow blood to flow the correct way from the right ventricle to the pulmonary artery.
But with pulmonary stenosis, the flaps do not open as they should. This narrows the opening of the valve and blood flow is affected.
When the pulmonary valve is too narrow, the right ventricle has to work harder and the muscle gets bigger.
A child may not show symptoms and it is uncommon for this condition to be found during pregnancy.
The most common symptoms may include:
Hard or fast breathing
Bluish color around the lips or fingers that mean low oxygen levels (cyanosis)
Shortness of breath
Feeling tired, especially with activity or exercise
Fast heart rate
Swelling of the legs, ankles, feet, face, or belly (abdomen)
Fainting (syncope)
Chest pain
Moderate of severe stenosis needs repair, with options including surgery.
Complications of untreated and severe stenosis include heart failure and abnormal heart rhythm (arrhythmia).