Nia Lewis, Aled, Sion and Elain.
Link to original article.pdf(In Welsh, English translation below)
The hidden condition that kills in the womb
According to a mum from the Bangor area, there’s a need to raise awareness of a rare blood disorder that can affect babies whilst in the womb…
Days after her first child had been born, Nia Llwyd Lewis had to hold her baby still whilst the doctors tried to save her life. The doctors were searching for a vein so that Elain could have a transfusion of platelets. “It was awful…a very scary feeling. She was my first baby and I had no idea what was happening”, said Nia.
Five years ago, Elain was born with a very rare condition called Neonatal Alloimmune Thrombocytopenia (NAIT). To put it simply, the little girl was born with dangerously low levels of platelet cells in her blood. These are the cells that stop bleeding in the body, and if there is a lack of platelet cells in the baby’s blood, it can affect the brain, the abdomen and the spinal cord…or lead to death. Babies who have NAIT are in danger whilst in the womb and for a period after they’re born, due to a blood incompatibility between mother and child, and their mothers’ in turn create antibodies that attack the platelets in the child’s blood.
When she was only 2 days old, Nia Lewis’ daughter had to have a blood transfusion. “It took three quarters of an hour to find a vein for one transfusion – it was terrifying, having to hold her still so that they could find a vein and she was screaming in pain,” said Nia. Nia Lewis’ pregnancy had been fairly straightforward, and when Elain was born there was no sign that anything was wrong. “She was fine the night she was born,” said Nia, “but the next morning, the doctors came on their rounds to see the baby, only an hour before the nurses had seen her and she was fine, but by the time the doctor saw her, she was covered in something that looked liked purple freckles. “They thought it was a rash, so she was given antibiotics.”
But during the first week of her life, it became apparent that Elain had extremely low platelets, and that she had NAIT. Usually, new babies’ platelets levels are between 150,000 and 400,000. Nia Lewis’ little daughter’s platelet level was only 4,000. “Elain had to have 6 platelet transfusions during the first five weeks of her life,” said her mother. “She was a newborn baby, and they had to find a vein in her hands and feet, and then around her ankles.” Whilst she was pregnant with Elain, Nia Lewis had no idea that she had double negative antigens, which were endangering her daughter’s life.
She’s talking about her experience in Golwg in order to raise awareness of the condition and tests to find NAIT in pregnant women. “If they tested every pregnant woman, they could tell who have this condition during pregnancy. It’s an awful condition that can cause cerebral palsy, blindness and epilepsy, amongst other things.”
Elain’s platelet level started to improve When Elain was eight weeks old, she started to get better as her platelet levels rose naturally, and within three months, she was fine.
Nia Lewis had another child too, and as the doctors knew about her blood condition, they were able to lessen the effect of the antibodies this time.
Whilst pregnant with her son, Siôn, the mother from Rhiwlas, near Bangor, would go to the local hospital to receive a transfusion that helped to lessen the effect her antibodies were having on her baby’s blood in her womb.
The baby was born via Caesarean, in order to be totally safe. “If a baby with low platelets has a natural birth and they use forceps etc, the pressure can destroy their brain,” explained Nia Lewis. To put it simply a baby who has NAIT is in danger of bleeding internally if forceps are used, as his blood isn’t able to clot naturally. Siôn was born with a platelet level of 130,000 – much higher than his sister – due to the treatment his mum had when she was pregnant.
By now, Elain is five years old, and Siôn is two and a half years old, and both are totally healthy. But Nia Lewis feels extremely lucky that Elain didn’t have any permanent damage. Over the years, the 33 year old mother, who’s the Language Unit Manager at Conwy County Borough Council, has researched the condition, and has found mothers all over the world who have had similar experiences. These mothers are putting pressure on the authorities to test all pregnant women to see if they’re in danger of endangering their babies. “I don’t want anyone else to go through what we’ve been through,” said Nia Lewis, who’s extremely thankful that her daughter doesn’t suffer from any permanent condition due to everything that happened when she was born.
“I count myself extremely lucky that I’ve had two healthy NAIT children.”
There is a very special bear travelling around the world, which is on his way to France, Australia and Saudi Arabia, amongst other places. The teddy has already been to Wales to raise awareness of NAIT.
During his time in Wales, the teddy visited Bethel Primary School where Elain is a pupil, Ffalabalam Nursery in Bangor where Siôn receives care. He also visited the Special Care Baby Unit and Alaw Day Unit at Gwynedd Hospital.