It all started when Stefania first fell ill during her honeymoon. Doctors said that she was suffering from a rare condition called restrictive cardiomyopathy, which may have begun with a simple tooth infection.
‘The doctors are still not sure how it started,’ said Stefania.’But I was so ill. At one point I was in so much pain I said to my husband: “Just let me die. But luckily he made me fight.”’
Days progressed to weeks, months and years and in 2008 after three years of suffering, a donor heart was finally found that matched her rare blood type. That heart was of 14 year old Sean Clegg, who had been killed by a car while riding his bike.
When Stefania finally had a successful transplant at Newark Beth Israel Medical Center she felt her life was worth living after all.
‘At first I felt my heart beating so strongly in my chest I thought there was something wrong. I had energy for the first time in years.’
Doctors had advised her to avoid pregnancy for at least a year, but nature had other plans and within a few months, Stefania was pregnant with twins.
The news began another 7 months of stress for the couple as the doctors thought pregnancy with twins was too much of a pressure for the transplanted heart. They were also told that the babies had a 90 per cent chance of being diagnosed with Downs Syndrome.
A nucal fold test, done after a few weeks revealed the babies did not have Downs syndrome but twin transfusion syndrome (TTS) where one baby was taking most of the nourishment in the womb, making the other underdeveloped.
The couple were again warned that the small baby might die, turn toxic and kill the large baby.
‘They thought both babies would die or I would have to abort the smaller baby to save the other, said Stefania. It was devastating. I couldn’t bear it.’
But although the nurses and doctors warned them about the complications, they all stood by her all the time. At 20 weeks and then again at 25 weeks, Stefania started experiencing labor pains, but luckily the babies held on until 32 weeks when they were delivered by c-section.
‘I was very low on amniotic fluid and I was rushed to hospital yet again,’ she said. ‘There was about 50 medical experts in the room for the birth, they had a specialist for everything – they took very good care of me.’
Arriving weighing just 4lbs 2oz and 2lbs 13oz, Melania(above) and Natalia(left) were placed in incubators for weeks. Shortly after birth, doctors had to perform a surgery on Natalia for a rotated bowel and also remove her appendix.
Finally when the twins came home, Stefania and Richard, her husband could think of only one person they needed to thank, Gail, Sean’s mother.
‘Thanks to Sean Clegg, who gave me his heart, there are now three people living that wouldn’t be here without him.’
Gail and Stefania now plan to raise awareness about the importance of carrying a donor card.
Cardiologist Dr. David Baran says,
‘We knew it was going to be an extremely high-risk pregnancy. It is a wonderful feeling to be part of the team which made this miracle possible.’
– Atula, Staff Writer
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