Louise Gill’s artile in The Donegal News, North West Ireland, Friday 15th July, 2011
Link to pdf file of original article
Louise Gill with her sons Rory, Matthew and Daniel as they celebrate Daniel’s fourth birthday.
A FALCARRAGH mother of three boys is one of three known sufferers in Ireland from a rare blood disorder which can cause a baby’s death before or shortly after birth.
Louise Gill was thrilled to be celebrating her second son Matthew’s birthday on Tuesday, knowing how different the outcome could have been. She and partner Pascal have three boys, Rory (6), Matthew (4) and Daniel 18 months.
Louise discovered she has a rare genetic disorder known as neonatal alloimmune thrombocytopenia or NAIT after Rory was born.
When the unborn baby’s platelets (the smallest of the three major types of blood cells) are not recognised by the mother’s body, she sometimes makes antibodies which attach to the baby’s platelets causing the babies platelet count to drop dramatically. This can cause babies to bleed into their brain, stomach or spinal chord, prior to or shortly after birth. Babies can be at serious risk of brain damage or death.
Because of her traumatic experience Louise is trying to raise awareness of the rare condition and is working closely with a newly founded charity in Britain doing the same.
She plans to run the Gortahork 5K on July 29 and do the Falcarragh fun run to raise funds for the charity in the hope that more people become aware of the serious risk this genetic disorder poses for babies.
“When Rory was born I had no idea there was anything wrong. When he was delivered part of his scalp came off and there was so much blood the doctors through he had had a brain haemorrhage. I was terrified. His platelet count was so low his blood was not clotting at all – he was haemorrhaging. The normal platelet level of a new baby would be between 150,000 and 300,000. Rory’s was just 15,000.
“Thankfully Dr Hennessy, who was the Consultant Haematologist at Letterkenny General Hospital where Rory was born, knew right away something was wrong with his blood. I am very grateful to all the staff who looked after us,” Louise said.
After a number of blood transfusions Rory was able to go home two weeks after he was born
It is Louise’s long-term goal that some day all mothers and their partners will be routinely screened for NAIT. With the treatment that is available once the condition is diagnosed, mother’s can go on to have healthy babies.
“When I was expecting Matthew and Daniel I was under the care of Dr Hennessy who drew up a treatment plan for me called IVIG – intravenus immunoglobulin. I received this in Letterkenny General Day Services Unit from the 20 week stage of my pregnancies. It is a very time consuming treatment, taking up to 8 hours each week and lasted until the 35th week.
“I had to go to Holles Street Hospital in Dublin to see Dr McPartland who is the leading doctor in foetal medicine in the country. He matched the platelets for the my unborn babies and you can be transfused while lying there. Both of my younger sons were born by C-section and there platelet counts were fine. It is easy to treat the condition once they know it is there,” Louise said.
Because it is one of many rare blood conditions there is no test done for it. Both the partners and mother’s blood can be tested for the gene and on occasion sisters can also have it. Only when Louise was expecting baby Daniel did she discover other people affected by NAIT.
“I thought to myself I cannot be the only person in the world with this rare condition and online I found a Yahoo support site which was set up by one woman in the USA. Her son was seriously disabled because of the condition. At NAIT we hope to let more people know about the condition and what help there is. Sadly I have spoken to mothers who have lost their babies because of NAIT.
“NAIT the teddy will visit Falcarragh later this year. He is gong around the world meeting families affected by the disease that he is named after to heighten awareness among the public.
“I am looking for sponsors to help me raise as much as possible to help NAIT and every penny will go to them. So far the group only have around £500 and you need a minimum of £5,000 to register a charity,” Louise added.
Anyone seeking further information on NAIT can go to the website at www.naitbabies.org