Mother fighting for prenatal screening of blood disease
When Marin MacCallum’s son Lincoln was born 11 months ago, no one knew he could have endured massive brain damage or that he could have died.
He has a condition called Neonatal Alloimmune Thrombocytopenia (known as NAIT). He was born with a platelet count in his blood of five – fatally low for a new baby whose count should be between 150 and 500.
And although this disease is a result of a genetic blood condition that recent studies have found develops in one out of every 600 Caucasian pregnancies, neither MacCallum’s doctors nor MacCallum herself knew little Lincoln was at risk.
That’s because currently, pregnant women are not tested for this disease.
“He could have spontaneously hemorrhaged and either passed away or had a neurological disability due to (NAIT),” MacCallum said in an interview.
“He’s a miracle. He’s an absolute miracle. The fact that he had a platelet count of five and there are people (I’ve met) who have children who are older who have had higher platelet counts who are suffering from cerebral palsy, blindness, numerous disabilities and some have passed away – it’s just a miracle.”
NAIT is a blood-related disease that affects expectant mothers and their babies. It develops when platelets (a type of blood cell) in the pregnant mother and her baby become incompatible. The mother’s blood attacks the unborn baby’s platelets, causing them to drop dramatically. This can lead to bleeding into the baby’s brain or spinal chord, which results in brain damage or death.
Like most new mothers, MacCallum had not heard of this disease, so she turned to the Internet for more information.
“I went online to try to find anybody else like me because I’d never heard of this before – what NAIT is and how babies get low blood platelets. And I found this website with amazing support groups.”
Those involved with the organization naitbabies.org are now trying to raise awareness about the disease and trying to get health care systems across the globe to start screening pregnant women for NAIT.
They’ve been sending two stuffed teddy bears to families all around the world affected by this disease as part of their awareness campaign.
One of the NAIT bears is in P.E.I. with MacCallum and her sons this week.
If prenatal screening had been done on MacCallum, doctors could have detected the disease and given her intravenous treatments that have been shown to help reduce or alleviate effects in infants and reduce the severity of the disease.
This treatment could have potentially saved a previous pregnancy in which MacCallum suffered a miscarriage.
Currently, if pregnant women are concerned their babies may be at risk of this disease, they will not be tested for it – even if they request it, MacCallum said.
The only way an expectant mother is tested for NAIT is if previous births have resulted in babies affected by consequences of this disease.
That’s why MacCallum and others with the NAIT Babies organization are lobbying for prenatal testing.
“It’s just heartbreaking seeing and hearing what parents have to go through every day when a simple blood test would have detected it,” she said.
“And there’s many out there who are losing babies, and that’s devastating.”
MacCallum is taking the NAIT bear to playgroups, at least one school, to her older son’s hockey practices – anywhere to spread the word about the disease.
“Our main goals are to raise awareness about it, to try to get a vaccine for it and to get prenatal screening in all moms,” she said.
Her son Lincoln was sent to Halifax where he underwent three blood transfusions to get his blood platelet count up to normal levels, as well as brain and cranial scans.
Today he appears to be developing normally, but is currently in physiotherapy for his gross motor skills.
MacCallum is happy her baby is doing well, but knows there are many others who are not as fortunate.
That’s why she says she will continue to try to raise awareness.
“Every baby’s life is worth it.”
