"Have a heart and help me mend mine": Leyland mum's plea for life-saving surgery not available in Lancashire

Gemma Kavanagh-Barber, 39, was diagnosed with bicuspid aortic valve 12 years ago meaning she only has two flaps in the valve rather than three, preventing oxygen-rich blood from reaching the body properly.

>>>Click here to learn more about the condition.

Her condition has severely deteriorated since contracting Covid in January, and now she requires open heart surgery.

But due to backlogs caused by the pandemic, she says she's been told she must wait until her condition becomes critical before she gets surgery on the NHS, and not all surgery options are available to her.

>>>Click here for more information about NHS backlogs in Lancashire.

A new treatment with longer-lasting results and a much shorter recovery time is only available in Greater London.

Gemma said: "Obviously this condition is not good for anyone, but I have three young children and the thought of anything happening while I'm waiting is horrendous. If I get any chest pains or I'm unwell, I'm on pins.

"I've been in A&E twice in the last month with pains. I get checked and discharged and they say 'speak to your specialist', but it's not as simple as that."

Diagnosis

Gemma was diagnosed with the hereditary heart condition after suffering from palpitations in 2009. It followed her losing weight to boost her chances of conceiving and she was initially told the weight loss could have caused a hormonal change, but was sent for an echocardiogram as a precaution.

When the cardiologist delivered the news, Gemma was left devastated.

She said: "I was at the appointment on my own, I thought everything was going to be alright, it was all precautionary.

"So when I heard the news, I was devastated. There were so many questions -what does it mean for me, am I allowed to have children?"

Gemma was told that she would be better to have children within the next five years incase her valve deteriorated, but that not everybody with the condition needed surgery."

Gemma went onto have Finley, 11, Niall, 4 and Robyn, 18 months.

She added: "It's a hereditary thing, so we had all the family scanned, and they were all fine. I must have got it from a grandparent, but I'm not sure.

"Then when the children were born, they had a scan within the first two weeks of life, and luckily they haven't got it either."

Deterioration

Gemma was initially given check-ups every three years, and more recently has had them every 12 months.

After suffering from Covid at the start of the year, and after experiencing prolonged shortness of breath, her 2021 appointment was brought forward.

It was at the last echocardiogram in June that her consultant told her she was going into severe stenosis - which means the thickening and hardening of a valve.

This higher pressure in her heart has lead to an aneurysm - a bulge in a blood vessel - in her aorta. A critically-important CT scan to better determine the extent of the aneurysm has also been delayed by the pandemic.

"I'm considering going private for that too", said the NHS podiatrist.

Surgery options

Gemma says she has been advised that in Lancashire, she could have a tissue valve replacement, or a mechanical valve.

She said: "The tissue valve has a very short lifespan and I'd probably have to have it done again in three to five years time. They don't really offer it to younger people, so the mechanical valve is really the only one I've been offered."

The surgery for a mechanical valve involves opening up her chest, breaking her ribs and will leave her incapacitated for 12 weeks while she heals. It also means she will be required to take warfarin for the rest of her life.

To complicate matters, Gemma also has the condition lipoedema which is an abnormal build-up of fat in your legs and sometimes arms. It can cause severe pain, which might cause Gemma to be wheelchair bound within 10 years if she doesn't get treatment.

>>>Click here to learn about lipoedema.

The only treatment apart from using compression stockings, is liposuction, but this would be ruled out as too risky if she was on blood-thining Warfarin to prevent clots.

Resilia Valve treatment

An alternative option is available but only privately, unless you live in the Greater London area.

Gemma found out about the proceedure through a Facebook support group and made an appointment to see one of the consultants pioneering in replacing faulty valves with a new one grown from bovine cells.

This new valve will not require replacement before at least 20 years, and Gemma’s recovery would be significantly reduced to between six and eight days. She will not be required to take any blood thinning medication and will be able to lead a full and normal life, whilst also being in a fit condition for surgery on her lipoedema.

She said: "I've said I'm willing to travel and pay all the expenses for it to be done in London, but it doesn't work like that. I can't just hop between areas, and there's people in London who are on a waiting list for this treatment."

She's been told it's a 'postcode lottery' of which health trusts offer the surgery, and the only way to get it is to pay £33,000.

Fundraising

Her sister Nicola Lambourne, 46, has now set up a Go Fund Me page to secure the cash.

>>>Click here to donate.

"I've really battled with the Go Fund Me thing", said Gemma. I'm not that person. I'll always help other people, but when it comes to myself, I find it difficult.

"But my sister has persuaded me that we need to do something, so we've gone for it."

Gemma's husband David has been leading the fundraising with a hair and beard shave that raised £1,500.

She said: "His beard was his pride and joy, the youngest two children have never known him without it, so for him to shave it off was a big deal."

David has now committed to a sponsored full body wax to raise more cash, and friends have rallied round.

Friend Beccy Thomas is organising a "mega raffle", Sarah Fullick is doing a sponsored skydive, neighbiour Aaron Moffat has donated £1,000 from his business, and a 33,000 mile Strava bike ride has been planned.

What does the NHS have to say?

A spokesperson for NHS England and NHS Improvement, North West said: “The NHS does fund surgery for Bicuspid Aortic Valves both in the North West and across the country.

“Any decision to undertake such complex procedures are made by clinical experts who can see whether the benefits to the individual outweigh any risk and we would advise any patient to discuss options for treatment with their consultant.”