Twins with half a heart each!
Sunday 29th June 2008
The doctor smiled kindly as the nurse wiped the blue gel off my tummy and pulled my top down over my bump.
'I'd like to have a quick chat with the specialist about something,' he said. 'Why don't you come back in half-an-hour?'
I wasn't worried. My boyfriend, Paul Taylor, 32, and I already had one baby, Alex, now 18 months, and we both assumed this extra attention was routine with twins. Like the special 'Echo' scan I'd just had, showing the chambers of the babies' hearts.
I'd met Paul in September 2003, when we both worked at Newcastle Airport — me in one of the airport shops, and him as a ramp agent, shunting planes around on the runway. Three years later, we had Alex, and when he was just a couple of months old, I fell pregnant again. Once the shock had passed, Paul and I were thrilled. And at my 12-week scan, there was another surprise, when we discovered I was carrying twins.
So here we were, eight weeks later, in July 2007, sitting in a quiet room at Leeds General Infirmary, waiting for the doctor. But when he came in, his face was serious.
'I'm so sorry,' he said. 'I have bad news. Both Baby One and Baby Two have problems with their hearts.'
We sat there in shock, as he explained the twins had a rare condition called Hypoplastic Left Heart syndrome.
One of the main pumping chambers on the left of each of their hearts was too small, making that side undeveloped and weak, while the major aortic valve was too narrow. Once they were born and no longer got their oxygen from me, neither of them would be able to pump enough oxygenated blood round their bodies to survive.
The twins weren't identical — they'd been conceived with separate eggs and each had their own placentas. How could both of them have only half a working heart each? The doctor couldn't explain it.
'What can we do?' I asked.
'You have three choices,' he said.
The first was a termination, even though I was already five months gone. The second was to allow the twins to be born, only for them to die soon after birth.
'What's the third option?' I asked, desperate for hope...
'There is a possibility the twins could have an operation as soon as they're born,' the doctor explained. 'But the aortic valve which leads out of their heart would have to develop to 3mm in diameter.'
Of course, we grabbed that third option, but it wasn't that simple.
'I have to tell you that the valve is unlikely to develop enough in time,' the doctor said. 'You need to seriously consider the other options.'
How could we choose between a termination or seeing our babies die as soon as they were born? We had two weeks to make our decision, so a few days later, we went to see a counsellor at the hospital, who explained what a termination would involve. Doctors would insert sulphur directly into the babies' hearts, stopping them instantly.
'Can the twins feel anything yet?' I whispered.
'At five months, their nervous systems are developed, so I'm afraid the honest answer is yes,' the counsellor replied.
A termination felt impossible. But the second option seemed just as terrible— giving birth only to watch them die. Paul and I both knew what we had to do.
'We want them to have the operation,' we said.
On 11 October 2007, I was induced at Birmingham Women's Hospital. The labour was easy and the boys were born just after 8.30am, 13 minutes apart. Stefan, came first, weighing 5lb 10oz. His brother, Sebastian, was 5lb 2oz. When the midwife put them on my chest they looked perfect. But after just 10 minutes, they were whisked away to Birmingham Children's Hospital, while I stayed at the Women's Hospital overnight. Paul went with the boys and, sick with worry, all I could do was wait for him to call.
It felt like an eternity.
'How are they?' I demanded, when my mobile finally rang.
'They've had their heart scans,' he replied. 'Their aortic valves are exactly 3mm.'
'Thank God,' I whispered.
It was just enough to persuade the doctors to go ahead with the operation. Surgeons would insert a shunt into both the boys' hearts to keep their aortic valves open, allowing oxygenated blood to flow around the body. I was discharged from the Women's Hospital, and was there when Stefan went into surgery.
After five agonising hours, the surgeon came to see us.
'The operation has been a success,' he smiled.
But we couldn't relax — 24 hours later, Sebastian would face the same procedure. He was smaller than his brother, but he sailed through, too. After that, they just grew stronger. Four weeks on,
we took them home.
They each underwent a second major operation in April, as they had begun to outgrow the shunts fitted at birth, and they'll need a third and final op between the ages of 3 and 5. But although
they'll have to have twice-yearly check-ups for the rest of their lives, they shouldn't need any further operations.
Now eight months old, Stefan is always smiling, while Sebastian is the explorer. They may be different, but there's an extra special bond between them. They may only have half a heart each, but they're real little fighters. One day, we'll tell them just how lucky they are.