Updated: Mar 2
Did you read the announcement last week that Manitoba is going to be introducing newborn screening for SCIDs next year?! That's some exciting news.
During the last 2 years, inside our own journey with SCIDs, we've been in discussions with our transplant doctor about getting newborn screening, as he's been advocating for this screening for years. Now, it's finally coming!
SCIDs is Severe Combined Immune Deficiency, a group of 13 rare conditions of the immune system. When your immune system isn't functioning, exposure to any type of illness, whether it is viral or bacterial, can be deadly (do you remember the Bubble Boy? -he had SCIDs). Most children who have this condition don't live past two years old; it's usually diagnosed around 6 months. Once diagnosed, the treatment is bone marrow transplant, to provide the body with the immune cells that are either missing or not working.
Right now in Manitoba, SCIDs is usually caught when the infant is sick...really sick. That's how it happened for us. At 7 months old, our daughter made it through a really bad pneumonia- 3 weeks in the ICU, 3 more weeks on the ward- she just couldn't kick the infection. When an immunologist was consulted, she ran the further blood tests, and it was discovered, leading us into the world of transplant.
It's one of the days I will never forget. You are given a diagnosis, thrown into a whirlwind of change and new treatment plans. It's overwhelming and chaotic. SCIDs is considered a pediatric emergency, every next step was urgent.
As we've gone through our journey and come out the other side, I've often thought about what it would have been like to be given that diagnosis after birth, when you are staring at your brand new, perfect little baby. The newborn screening will bring to light a big diagnosis, before we see any symptoms...but also before there will be any damage.
As the province introduces this new screening, we will start to see the benefits, which are so, so important and here's why.
1. Early Diagnosis Means Less Damage
We are grateful that our daughter has minimal damage to her lungs from the pneumonia, but as she grows older, she may have trouble with asthma or something else with her breathing. Damage to the body from infections can cause long term effects in the child, so preventing these infections is key to their long term health.
2. Early Transplant Has High Success.
From the research I have read, bone marrow transplant in the first 3 months of life has success rates of up to 98%. That's huge! Diagnosing these little ones early gives them a much better chance against a devastating condition and provide the best possible outcomes.
3. There's Higher Rates In Manitoba.
Two types of SCIDs are found in higher rates in Manitoba, one among the northern Cree, and the other among the Mennonite population. You can be a carrier of the condition, without having the disease, so we had no idea we carried it. This is another reason why the screening will be so important. A research study out of the University of Manitoba found that 1 in 10 were carriers. That's a pretty high number, likely because it was a small sample group, but it makes the case for screening our kids, especially if the rates could be that high. (Here's the link for the research article if you like that kind of stuff).
4. It Shows The World We Care About Our Kids
Newborn screening demonstrates that we care for, and value, the lives of our children. Doing the best we possibly can to promote good health and prevent illness, as we use what we know about the bodies God has created us with.
Over and over again, I am grateful for science, through which we learn the intricacies of God's good creation. Without it, our daughter would have succombed to illness and died.
Our bodies will not live forever, but one day we will be given new ones and enjoy the glory of God forever, without the curse of sin and the sickness it brought. What a sweet hope we have!