A couple has spoken of their heartbreak after their identical twin baby boys died when a rare condition attacked them in the womb.
Leo and Tyler were born at just 25 weeks, with Leo being delivered as a stillborn and Tyler passing away 18 days later on May 26.
They were diagnosed with the life-threatening condition twin-twin transfusion syndrome after their mother Caroline Willis, 26, complained of crippling abdominal pain at 24 weeks.
The lab technician and her partner Lee Brightman, 30, from Leighton Buzzard, Bedfordshire, have since accused Stoke Mandeville Hospital of not taking her symptoms seriously.
Miss Willis, who suffers from polycystic ovaries, said: ‘If the NHS had acted quicker we believe our boys would have had a better chance of surviving.
‘We walked out of the hospital with two memory boxes instead of carrying two car seats with our babies in.’
And to add even further heartbreak, Miss Willis – who conceived via IVF – is not eligible for further free fertility treatment due to her first round being a ‘success’ despite her losing their twins.
Caroline Willis and Lee Brightman lost their identical twin baby boys Leo (pictured in left frame) and Tyler (right) after they developed the rare condition twin-to-twin transfusion syndrome in the womb. Leo was born stillborn and Tyler passed away 18 days later
Pictured holding Leo after he was delivered stillborn, Mr Brightman said ‘seeing your son die in front of you is horrendous’. The pair cradled their son and told him they love him
Speaking of the ordeal, Miss Willis said: ‘It was one nightmare after another.’
She claims she had a normal pregnancy until she began to experience unusual pains six months in.
‘I tried to get an appointment with Stoke Mandeville Hospital,’ she said.
‘We were seen three times within that week but were told everything was okay. I eventually took myself back as my pain became excruciating.’
Miss Willis was only told the twins had TTTS following a scan shortly before the birth.
‘I later went into labour as Leo had heart failure already and was born stillborn,’ she said. ‘Tyler was a little fighter but he was so tiny and died 18 days later.’
The twins’ father Mr Brightman added: ‘I could see Leo hadn’t made it. I was trying to maintain my composure for Caroline.
‘To see your son die in front of you is horrendous.’
Both the twins were born weighing just one-and-a-half pounds (0.68kg).
‘To see your little boy wearing a hat for a premature baby that was even too big for him was heart-breaking,’ Mr Brightman said.
After being declared dead, the pair decided to have pictures taken with their son.
‘We were hugging Leo and holding him and telling him how much we loved him,’ Miss Willis said.
‘The staff were telling us how beautiful he was.’
Twin Tyler (pictured) fought for his life until he took a turn for the worse on May 26. Sensing something was wrong, the couple told the medics to turn off his ventilator. After his relatives came in to say goodbye, Tyler’s heart stopped beating just an hour after his treatment stopped
Miss Willis said it reached the point when Tyler (pictured) just could not fight anymore
Couple say they owe it to their sons to keep their memories alive. Pictured is their memorial
WHAT IS TWIN-TWIN TRANSFUSION SYNDROME?
Twin-twin transfusion syndrome is a rare but serious condition that can occur in identical pregnancies when twins share a placenta.
Abnormal blood vessel connections form in the placenta and prevent blood from flowing evenly between the babies.
One twin then becomes dehydrated, which affects its growth.
The other develops high blood pressure and produces too much urine.
This leads to an enlarged bladder and excessive amounts of amniotic fluid, which can put a strain on the twin’s heart, leading to heart failure.
Without treatment, TTTS can be fatal for both twins.
Around 300 twins die from the condition every year in the UK, while 6,000 babies are affected annually in the US.
Draining excess amniotic fluid can help to improve blood flow.
If this is not enough, laser surgery is used to seal shut abnormal blood vessels and permanently disconnect them.
The surgeon then drains excess fluid.
Even when treated successfully, most TTTS babies are born premature.
However, the majority go on to have long, healthy lives.
Source: Cincinnati Children’s hospital
For the next 18 days, Tyler fought for his life, surrounded by doctor’s and nurses.
But on May 26, his condition took a turn for the worst.
‘I told him mummy and daddy understand if you can’t fight anymore,’ Miss Willis said.
‘He didn’t look right at all and I just had this maternal instinct that something wasn’t right.’
The parents then made the heart-wrenching decision to tell medics to stop trying to save their son.
‘At 3am we told them to stop,’ Miss Willis said. ‘We held him from 3am till 7am. My parents came in and said their goodbyes.
‘And an hour later we asked nurses to remove the ventilator and his heart carried on beating for an hour before it eventually stopped.’
At one-and-a-half pounds, Tyler was too small to wear a wooly hat meant for premature babies
The couple claim the NHS did not take Miss Willis’ symptoms seriously when she suffered crippling abdominal pains at 24 weeks. The twins were born just one week later
After their horrific ordeal, the family left the hospital to return home, where they shut themselves off from the world.
‘It was quiet, although we’d never had them here it was just lonely,’ Mr Brightman said. ‘We just shut ourselves away and cried.’
Despite their grief, the pair have applied for a second round of IVF. However, they have been told they are no longer eligible.
‘It feels like it’s just going from bad to worse,’ Mr Brightman said. ‘I think our lives are on hold at the minute.
‘We want to have a family and to keep our boys’ memories alive.
‘We don’t know where are next steps are. We want to be parents and we owe it to Leo and Tyler.’
Carolyn Morrice, chief nurse at Buckinghamshire Healthcare NHS Trust, said: ‘The loss of a child is a profoundly sad time for all concerned, and we offer our sincere condolences to the couple and their family on the loss of their babies.
‘The couple’s consultant has met with them to discuss the care provided.’
A statement from NHS Buckinghamshire Clinical Commissioning Group said: ‘We offer our sincere condolences for the sad loss this couple has experienced.
‘Buckinghamshire CCG, like other CCGs locally, has a policy by which IVF treatments are managed for equity of access.
‘However, there is also a process by which individual cases can be considered in exceptional circumstances.’
Miss Willis and Mr Brightman are fundraising for another round of IVF. Donate here.