I use affiliate links on some of my blog posts. This means that I could make a commission if you click on a link and purchase something. Read my full disclosure here.
More than three years ago the hubs and I brought home our first dog, a beautiful Australian Shepherd named Ahsoka. She was a perfect and easy dog. We fell in love with the breed and I, in typical me fashion, threw myself into research and training.
Just nine months later we brought home our third and fourth Aussies, a pair of brothers named Murdoch and Riker (Clara had come home four months earlier). We found these two fluffy white puppies through a rescue and took a chance. We knew Riker was deaf and Murdoch had some vision issues. It took a while but we became a family and they adjusted into a four dog household.
As they grew we became more aware of each of their abilities. Riker was not only deaf, but had vision impairments and seizures. Murdoch was completely blind in his right eye but otherwise perfectly healthy. Why were these two born with special abilities? Because someone bred two Merle Aussies. Every time two Merles are bred, there is a 25% chance of every puppy in that litter becoming a double Merle. Murdoch and Riker are double Merles, meaning they have two copies of the Merle gene and it caused their deafness and vision problems. Double Merles are completely avoidable; just don’t breed two Merle dogs.
Why am I telling you all of this? One, because I’m a crazy dog lady and love my pack and my double Merle boys with all my heart. Two, because genetics freakin’ suck. Genetically, Murdoch and Riker got screwed. They could have been perfectly healthy and normal.
What Does This Have to Do with Walker-Warburg Syndrome?
Well, genetically we rolled the dice when I got pregnant and my son got screwed. My husband and I are the “Merles” and our son Christian got two faulty copies of our genes. He has spent the first three weeks of his life in the NICU because he has a condition in the line of congenital muscular dystrophies that will eventually take his life before he has a real chance to live it. That’s what Walker-Warburg Syndrome does, strips the life out of a child. Read more about it here.
Could we have prevented this? Technically, yes, by never having children. But how could we have known? How many people do a full panel of genetic testing before they get ready to have a baby?
It gets worse, though. Like double Merles, if we have any other children there will be a 25% chance they could also have this lethal syndrome. My biggest fear my whole life was that I wouldn’t be able to get pregnant. Yet on our first try, it happened. What is my biggest fear now? That I will never be able to fulfill my biggest dream, having a family and being a mom because of Walker-Warburg and faulty genetics.
How do you ever have the courage to try again, knowing that the same could happen? Yes there are alternatives that we could explore. But being pregnant and giving birth were truly two of the most treasured experiences I have. And I so desperately want the chance to have a normal pregnancy and motherhood. I feel as though I’ve been robbed of two of the things I’ve wanted and cherished most.
Don’t get me wrong, I have absolutely no regrets. None. As awful as this journey has been, my Christian has been worth every pain, every tear, every bit of anxiety and stress. But that doesn’t mean I don’t want the “full” mommy experience without the MRIs, the echocardiograms, genetic testing, and NICU stays.
So where do we go from here? I don’t honestly know. Life is so fragile and uncertain and, as strange as it is for my type A personality, I have no future plans. We’re taking life one day at a time. Holding Christian and loving on him as much as we can with the time we are given.