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IT WAS supposed to be the happiest time of her life. Donna Hewetson had discovered she was pregnant with her longed-for first child and was looking forward to life as a mum.
But while morning sickness, swollen ankles and stretch marks are the biggest complaints for most expectant women, for Donna pregnancy was the start of a roller-coaster ride which left both her and her unborn child battling for their lives.
The 29-year-old from Fradley has now been diagnosed with not one but two of the world’s rarest diseases.
Lymphangioleiomyomatosis (LAM) is an extremely rare, progressive lung condition which affects just one in a million women.
Tuberous sclerosis is a linked condition which strikes around one in 6,000 and causes benign tumours to grow on sufferers’ vital organs.
Happily both Donna and her daughter Lily, now 23 months, survived the pregnancy ordeal.
Lily is a thriving toddler, but Donna lives with the knowledge that her conditions are a ticking time-bomb requiring continual monitoring.
With no cure, she knows that dialysis and a lung transplant are distinct possibilities in the future.
Because it is so rare, LAM is a condition which is almost unheard of outside of sufferers and their families and close friends. This means funding for research into the disease is scarce.
But many sufferers find solace in the help of LAM Action, the national charity which offers support and advice as well as funding research.
Earlier this month Donna’s younger brother Ash Brough, from Sutton Coldfield, ran the London Marathon to raise much-needed funds for the charity.
“When I was 12 weeks pregnant I got admitted to hospital with excruciating left-sided pain,” recalls Donna. “The doctors couldn’t understand what it was, but they knew it wasn’t pregnancy-related.”
A scan showed Donna was suffering from massive internal bleeding but couldn’t determine whether it was stemming from her kidney or spleen.
“By this point I was rolling around in pain, so they took me to theatre,” says Donna.
“I consented to a laparotomy with a view to that if they needed to open me up, they could.
“They put the scope in and there was blood everywhere, so they opened me up and discovered my left kidney had haemorrhaged.”
Donna had lost a lot of blood and doctors had to remove her kidney to save her.
“I woke up the next day in intensive care and I didn’t know what had happened,” says Donna.
“It was so scary, but I just wanted to know if my baby was okay and why I had such a massive scar on my stomach.”
Suspecting it was cancer, doctors did a biopsy on Donna’s removed kidney. Instead they found a much rarer cause – tuberous sclerosis.
Suddenly the prognosis for her baby was bleak, and doctors broke the news to Donna’s partner, now husband Matt, that their child was unlikely to survive the pregnancy.
And sadly for Donna and her baby, the trauma didn’t end there.
Just days later she developed serious problems with her lungs.
“It was after that operation that my right lung collapsed,” says Donna.
“The doctors thought it was because of the stress of the operation.
“I had to have a chest drain put in and they could only give me local anaesthetic because of the baby.
“It was the worst pain I’ve ever experienced.”
Attempts to re-inflate Donna’s collapsed lung continued to fail and after six excruciatingly painful chest drains and an emergency CT scan the doctors hit on the possibility of LAM.
Donna was immediately sent to Leicester Hospital for more specialist care.
“The hospital is more specialised in cardiothoracic problems,” says Donna.
“They tried numerous things but my lung still wouldn’t re-inflate.”
So doctors performed an operation which involved stripping the lining of Donna’s lung, revealing a series of benign cysts which were symptomatic of LAM.
The lung was then treated with talc, which disperses new cysts as they form and limits the risk of the lung collapsing again.
“They took a biopsy there and then, and they actually filmed my surgery for research because they’d never seem LAM before,” says Donna.
“The doctors warned me that once one side was corrected, there was a high risk of the other side collapsing, and sure enough my left lung collapsed shortly after.”
Another chest drain and another round of surgery followed and Donna was again told her baby was unlikely to survive.
Because LAM and tuberous sclerosis are thought to be affected by the female hormones oestrogen and progesterone, Donna’s pregnancy was seen as the trigger.
And while she remained pregnant, she was at risk of the disease progressing. Once again, the subject of ending the pregnancy was raised by doctors.
“The longer Lily was in there, she was safe, but I wasn’t,” says Donna.
“But she’d just come through major surgery and I didn’t want to give up on her.
“She was my little girl and I was determined to keep her.
“We’d had a miscarriage two months before we conceived Lily, so she was the child Matt and I desperately wanted.
“Because the pregnancy hormones were thought to be a trigger, doctors said I should not ever think about getting pregnant again, so she was my only chance of becoming a mum.”
Donna’s case was referred to a specialist, who advised that she could continue with the pregnancy as long as she was closely monitored.
It was a case of getting to a point where we knew the baby would be able to survive, and at 28 weeks the survival rate increases dramatically,” says Donna.
While Donna’s lungs were functioning again, the cysts on her kidney were still growing and at risk of haemorrhaging. When she was just under 28 weeks pregnant, doctors decided enough was enough.
Lily was delivered by Caesarean section three months premature weighing just two-and-a-half pounds and spent nine weeks in an incubator before being given the all-clear.
But instead of being able to enjoy time with her new baby, Donna was still fighting her own illnesses.
“Lily spent a long time in hospital but even when she came out I was still battling with my lungs,” says Donna.
“Being pregnant had weakened my lungs so much that I was struggling to breathe, struggling to pick Lily up and I was on the brink of going on oxygen.
“I was referred to the only LAM specialist in the country, Dr Simon Johnson in Nottingham, and eventually I was put on a trial drug – rapamycin – last June which has helped with a lot of my symptoms. I still have to be monitored and have lung function tests but I’m a lot better than I was.”
Throughout her ordeal Donna relied on the support of her family, including partner Matt, mum Verona and brother Ash.
“Matt in particular has been incredible through it all,” says Donna.
“He was there for all the operations and hospital visits and he came to see me every night.
“I was in hospital for such a long time and his support was amazing.
“We’d just had a golden retriever puppy, Henry, and Matt spent every day going to work, looking after the puppy and coming over to Leicester to see me.
“He was a rock – I couldn’t have had a more caring, supportive partner.”
After five years together, in November last year Donna and 29-year-old quantity surveyor Matt tied the knot – with miracle baby Lily as their bridesmaid.
“At the moment I try to maintain as normal a life as possible,” says Donna.
“I still get out of breath some days and at certain times of the year my breathing gets worse anyway.
“I’m restricted – the thing that worries me the most is that I won’t be able to run around after Lily as she gets bigger.
“There are still times now when I struggle to pick her up, or when I get out of breath just going upstairs.
“I used to be a real gym fanatic before this happened and I used to do a lot of running, but that’s gone out of the window now.”
There is currently no known cure for either of Donna’s conditions, so the uncertainly of what may happen casts a shadow over Donna’s quest for a normal life.
“We don’t know what the future holds – that’s the most worrying thing,” says Donna.
“We don’t know whether this drug will continue to work, so it’s fear of the unknown which really gets to me.
“I might be okay now but I dread getting to the stage where I’ll need a lung transplant.
“My lungs are only working at 50 per cent of what they should be, so I have to really take care of myself just to manage.
“But at the moment I’m still working four days a week and then taking care of Lily when I’m not at work – I just want to be like any other young mum.”
Now Donna and her family are looking at ways of giving something back to the people who helped support her through her illnesses.
“I got involved with LAM Action through the LAM specialist I’m under at Nottingham, Dr Johnson, because his wife runs the charity,” says Donna.
“The charity doesn’t receive any Government funding, which is why Ash wanted to support LAM Action and raise money.
“LAM is so incredibly rare that people don’t know what it is and there’s not enough research going into it.
“The drug I’m on costs between £5,000 and & £6,000 a year, so it’s nice to be able to give something back.
“LAM Action also offers support and advice for sufferers like myself.
“There has been a lot of people involved in my care and there still is – the hospitals and doctors have been brilliant.”
Fitness fanatic Ash said: “Many people played a big part through this difficult time for my sister including specialists, doctors, and nurses, not forgetting Matt, who showed immense love and support in her time of need,” says 23-year-old Ash.
“My sister has been to hell and back,” adds Ash.
“But thankfully she pulled through. It’s a testament to all the care she received from the medical team looking after her.”
To find out more about LAM, visit www.lamaction.org.