Woman with rare condition to have baby even though labour could trigger a lifetime of pain
Pregnant woman has complex regional pain syndrome which causes chronic pain and swelling following a minor injury
12:07 GMT, 11 May 2012
Debbie Mills with her partner Dan Hamlett are worried giving birth could make Debbie's chronic pain condition worse
A young mother-to-be who was told she would never become pregnant due to a rare condition has decided to keep her miracle baby even though the birth could leave her experiencing labour-like pains forever.
Seven months pregnant Debbie Mills, 23, was diagnosed with complex regional pain syndrome (CRPS) in October 2009.
CRPS is a chronic disease of the
autonomic nervous system which causes extreme pain and swelling and for
which there is no cure. The condition varies in severity but is
progressive in some patients like Debbie, spreading to different parts
of the body after an injury.
sufferers are injured or undergo surgery they are left with pain in
that area often for the rest of their lives. Debbie's condition began
at the site of an old injury in her right foot, which suddenly became so
swollen and painful doctors told her they may have to amputate it
before eventually diagnosing her with CRPS.
As a result, the slightest knock could leave Debbie in pain permanently
which means she faces prolonged agony from the labour.
However, Debbie is determined to go ahead saying her unborn child with partner Dan Hamlett, 23, is a miracle.
Mills from Chellaston, Derbyshire, said: 'When I first found out I was
pregnant I was completely shocked as I had always been told it was
impossible because of my condition.
first thought was whether I would even be able to have the baby and the
doctors were not able to tell me anything because they had never seen
anyone my age, with CRPS, get pregnant before.
'But it never for one moment crossed my mind not to have the baby. As far as I am concerned he is a little miracle and I can't wait to meet him.
Debbie's symptoms first began in September 2009 when all of a sudden she stood up from the sofa to go to bed and felt a sharp pain in her foot. /05/10/article-2142345-1304A326000005DC-882_306x339.jpg” width=”306″ height=”339″ alt=”Debbie Mills at her 21st in her wheelchair ” class=”blkBorder” />
Debbie Mills at her 21st birthday in a wheelchair (left). The condition CRPS has caused chronic pain and swelling to her right foot (right)
Over the course of the next week, Debbie
was on crutches while medics attempted to diagnose her problem.
Eventually she was admitted to hospital for eight days and tested for
everything from cancer to arthritis.
During this time, her foot had become so
swollen and black with bruising that she was told she might lose it.
She said: 'It was the most unimaginable pain. At times it felt like I
was being stabbed over and over in the foot. My skin was so sensitive
that it hurt to even have my toes touching each other and I would push
them apart with little bits of tissue paper.'
Eventually doctors diagnosed her with CRPS, a condition in which the nervous system becomes so sensitive that patients experience extreme, incurable pain and swelling, often at the site of old or new injuries.
Debbie, who was studying for a degree in fine art at Staffordshire University at the time, had broken her foot twice before and doctors believe this old injury might have been the trigger for her CRPS, but the condition often presents with no known cause.
Baby joy: Debbie is delighted to be pregnant despite the possibility the birth could leave her in severe pain
She said: 'When they first told me about
CRPS, I couldn't believe it was happening to me. I couldn't quite get
my head around the fact that my life was now going to consist of
constant pain and that there was no cure.
'I had always been so active and I
loved agility training with my dogs and I had danced tap, latin and
ballet since the age of five. I can't do any of those things now.
when they said I wouldn't be able to have children I don't think it
really sank in because of everything else they were telling me. I had
always imagined I would be a mother someday, I was crushed.'
CRPS: Complex and poorly understood
Doctors say complex regional pain syndrome is poorly understood.
It is triggered by a minor injury in 90 per cent of cases, but the cause is unknown in the rest. The main symptom is a burning pain felt around the injury site, which gets worse rather than better over time.
It is thought to be a result of abnormal sympathetic nerve healing
following trauma, although how this happens is a mystery.
CRPS can affect men and women and people of any age although it's more common in females and those aged 40 to 60.
It may occur as often as in five per cent of all injuries,
but the true amount of cases is hard to establish as many cases are not
diagnosed and resolve spontaneously.
Currently doctors put prevalence at one in 50,000 but the severity of the condition varies widely. It may become so painful that patients beg the doctor to amputate the affected limb. Patients often feel the limb does not belong to them.
It is called complex because many patients experience other symptoms including swelling, sensitivity in other areas of the body, stiff joints and skin colour and temperature changes.
If treated quickly with pain medication and physiotherapy the condition can often go into remission. However, if allowed to spread to the whole limb the change can become irreversible.
Debbie spent the next three months in a
wheelchair and had to teach herself to walk again unaided over the next
Told by a consultant that she would have to use her leg “or lose
it”, she was determined to get walking again and over many months taught
her body how to operate despite the pain.
During this time, she began seeing Dan, a rail engineer, who she had known since her school days.
Debbie said: 'I was hanging out with some friends from home at weekends off from uni and my relationship with Dan just grew over time.
'I was struggling to get my independence back and having to hobble about on crutches all the time but Dan helped me to be myself and was always loving and supportive.
'I told him very early on that we might not be able to have children together and that doctors had said my only option would be IVF but he just said, 'If that's what we have to do, that's what we'll do'.'
However, the couple were greeted with a joyous surprise in November last year when, having felt unwell for some time, Debbie took a pregnancy test just to be sure. To her amazement it was positive.
Their excitement turned to
apprehension when they realised doctors had no idea how Debbie might
respond to the pregnancy or to the birth. CRPS can spread to any other
areas that become injured over time as Debbie discovered when doctors
were forced to operate on an old knee injury that was causing her
problems in October last year.
Debbie now suffers from pain all through her leg and right arm and
fears the labour – or even a caesarian section – could leave her in
agony for the rest of her life.
She said: 'There's also the chance
that I could be paralysed. My mum has started having nightmares about
the possible things that could happen and I admit I'm scared too.
'I might suffer the pains of labour for years after the birth or maybe forever – no one can tell me.
wants to take a month off for paternity leave because we don't know how
able I will be to care for the baby myself when it arrives.
Still smiling: Debbie pictured after her knee operation (left) which caused pain to spread throughout her leg. A foot injury (right) left her on crutches
'As the pregnancy has gone on I have been suffering more and I can't take any of my medications. Plus I've become a bit more clumsy the bigger I get which is not a good thing at all.
'I do worry. I can't ride my bike anymore because I can't risk falling off it and injuring myself and it occurred to me the other day that I will never be able to go on a bike ride with the little lad.
'But I try not to think about. My determination has got me this far and I know it will all be worth it in the end.'