Kerry Van Der Merwe has sunken chest syndrome, a rare medical condition that leaves her struggling to breathe. In many cases the syndrome – a malformation of the chest wall caused by the breastbone sinking inwards – is seen as a cosmetic problem that doesn’t warrant publicly funded surgery.
Ms Van Der Merwe has been speaking about her fight to get treatment for a condition that causes her pain and anguish.
The hairdresser, 44, says she has seen at least 10 GPs to talk about her breathlessness and accelerated heartbeat, but “not one of them” was able to tell her these symptoms were caused by sunken chest syndrome, also known as pectus excavatum.
“I couldn’t even open a jar but they’ve never said ‘let’s investigate it'”, said the mother of one, who lives in Devon. “It’s actually me who has educated them about pectus.”
Since February, the NHS in England has not offered routine surgery for those with the condition as it says there is insufficient evidence the benefits of surgical treatment warrant funding.
“There is absolutely no way I could live the way I am now because I’m being strangled inside. For them to say no is just absolutely disgusting,” Ms Van Der Merwe said. “I have been on antidepressants all my life since my deformities started.
“I can’t do something as simple as running up the hill or stairs because with your heart pumping blood so fast it’s really dangerous.”
Ms Van Der Merwe, who has a nine-year-old daughter, said she should have had the surgery 10 years ago, but GPs did not heed her requests for a specialist referral. “I’ve been trying to speak about my pectus to my GPs but I always feel like I get fobbed off, because no-one really has the knowledge about it.”
She therefore sought out thoracic surgeon Joel Dunning, from the James Cook University Hospital in Middlesbrough, for a specialist’s insight.
“She has never known what’s it’s like to be normal,” said Mr Dunning, who added there was “no doubt” his patient’s heart is being “squashed” by her sternum. He said it was “crazy” to deny “life-extending” surgery in cases like hers.
“The man on the street could tell you that if you have a squashed heart because of your chest, if you take the squashing away it makes the breathing better.”
Thanks to the intervention of the surgeon, Hull-born Ms Van Der Merwe, who also has Poland syndrome, is due to have a procedure to insert up to three titanium bars to raise her chest to a normal position.
Mr Dunning successfully argued she needed treatment after having poor surgery in South Africa, where she moved as a child. He said the “massive” psychological benefits of surgery, especially for young people, should be enough for the NHS to offer surgical treatment.
“These are poor little teenagers trying to find their way in the world and they feel very introverted, they won’t take their top off, they won’t interact with people of the other gender.”
- The NHS defines it as a malformation of the chest wall caused by the breastbone sinking inwards. It affects more males than females and it may be inherited.
- Symptoms include chest pain, breathlessness, fatigue, dizziness and a fast heart rate.
- According to the NHS, pectus has little psychological impact on the patient but it can sometimes cause distress “leading to concerns about appearance, withdrawal and social isolation”.
- In most cases it presents itself at birth but only becomes noticeable during puberty
- The condition can be treated with the Nuss procedure, which involves the placing of one or more metal bars to correct the abnormal shape of the chest. The bars stay in place for two to three years.
Katie Bruce was 21 when she fainted due to her sunken chest syndrome and was hit by a car. She lost four of her front teeth and suffered multiple facial fractures. One side of her jaw snapped off her skull and “never repaired”.
The Wolverhampton-based biochemistry graduate managed to get Nuss surgery in March, a year after first applying and being rejected. Because her chest dip was so deep, surgeons were only able to insert one metal bar. It ended up flipping on its side, and the 26-year-old was left bedridden while waiting for corrective surgery.
“It just feels like I’m being repeatedly stabbed between my ribs. No painkillers can help that,” she said. “I am 26, I have a degree and I can’t do anything. I can’t get a job, I can’t think of starting a mortgage for a house or starting a family. My life feels like it’s on hold.”
She is soon to undergo surgery to fix the flipped bar and have a second one inserted to distribute the pressure, in the hope this will reduce the pain.
Ms Bruce said she would not be in the position she is in now had the operation happened 15 years ago, when her bone structure was still forming and the chances of flipping were lower.
“If they were more aware of it in the first place and I’d been treated a long time ago I would never have been hit by the car and it would have cost the NHS a hell of a lot less in the long run.”
She said she too reported breathlessness and an accelerated heart rate but was not correctly diagnosed for years. “I am shocked at the amount of GPs I’ve seen and none of them have known anything about it.”
NHS England said in a statement that it no longer provides routine surgery for sunken chest syndrome as a “careful review of evidence suggests limited effectiveness”.
It said it “leads the world on innovation” and would “continue to test the most advanced procedures available, collecting real-world evidence to ensure NHS patients receive world-class care while delivering value for the taxpayers’ pound”.
Meanwhile, Ms Van Der Merwe waits for the operation she hopes will make all the difference. She says she’s nervous but knows she needs to have the surgery.
“I am fearful, but I know deep down it’s going to save my life.”