The phrase ‘less than one percent” has several meanings and can be applied to almost anything. There is, however, not a mediocre meaning to this phrase. Either it applies to the best case scenario or the worst case scenario and nothing in between. Our family has had a lot of experience being in the “one percent” category the past few years. It has been my experience that this usually carries a negative undertone and is associated with something bad happening. Honestly, this is sometimes how I view it. Negativity. Recently, it has been more often than not that I’m asking myself “Why?” and I’ve been searching for answers.
Last night as I was picking up the house I was debating with myself why things happen the way they do. The house was quiet, the kids were sleeping, I jumped in the shower and as I was standing there it came to me as clear as anything ever has. Let me give you a little history of our family and for those of you that know us, an update on our family dynamic.
Over three years ago, John and I found out we were having not one, but two babies. Two beautiful, amazing, unexpected babies. The chances of conceiving twins naturally is less than one percent. We planned a homebirth with three amazing midwives and a doula and embraced our new life. At 24+ weeks, I went into labor. They told us premature delivery was unavoidable and the best option was to try to keep them in as long as possible. We made it to 32+ weeks, I got to leave the hospital after an extended stay, and then I went into labor again. We were told making it through the week was practically impossible. At least our babies were viable now and we should hope for the best. Seven weeks later, I gave birth to our twins at home as originally planned. Safely. Impossible by medical standards. Less than a one percent chance? Most likely, but I have no data on that one. Hailey was in Children’s Hospital twice in the first month with no answers as to why she stopped eating and breathing. We resolved these issues without medication and through chiropractic care, craniosacral therapy, energy work, nutrition and supplements and homeopathic remedies. All in all, we were rather fortunate. I would guess, based off of my experiences with her doctors, that zero percent of infants with symptoms similar to hers are medication free. By her second birthday, she was finally sleeping through the night, having minimal allergic reactions, was free from obvious cranial shifting and holding her adjustments well. We had made it. We had survived and avoided the likely bankruptcy and relationship disaster that we were warned about post partum. If we could just make it through the first two years, we were golden. That’s what statistics told us.
Two months after their 2nd birthday, we discovered a congenital abnormality in Hailey’s spine. The clinical diagnosis is a hemivertebrae at L1 causing approximately a 34 degree congenital scoliosis. Basically, she is missing part of the bone that is supposed to protect her spinal cord and the deformed bone is causing a large curve. Not correctable without surgery. The hemivertebrae is responsible for approximately 25 degrees of that curve and the other 9 or so degrees is from progression of the curve due to growth. The incidence of this is “less than one percent.” To be exact, this occurs only .03 % of the time based off of a recent study. From what pediatric neurosurgery studies say, it is expected that the type of deformity she has will progress 1-5 degrees each year of life until she is fully grown. In the last two years, it has progressed 4.5 degrees each year. This deformity is corrected by surgery almost 100% of the time. If not, there is usually no treatment given and the person deals with whatever physical problems it causes, which can be many. When you look at the level of severity of congenital scoliosis, Hailey’s scoliosis is not far from the most severe for her age and the likelihood of progression makes it worse. Anything over 30 degrees usually can be predicted to cause multiple problems during growth and several outward symptoms including pain and neurological dysfunction. This is what the medical research says. This is what the medical clinical studies say. This doesn’t mean that it is absolute.
Initially, I was in denial. A chiropractor’s child isn’t supposed to have a spinal problem that is not correctable other than by risky surgery. That isn’t how this happens. What did I do to cause her to form this way inside of me? I became angry. Why is this happening to us? Haven’t we been through enough? What could we have possibly done to deserve this? I didn’t want to tell anyone. What would someone think if a chiropractor resorted to surgery for their child? This isn’t how we do things. I know better. I have extensive knowledge that tells me things don’t turn out well when spinal surgery is done. Anyone recognize those stages? Last night, I realized that I’ve been looking at this the wrong way. In the wrong light and in negative energy. I’m really going to try not to revert back to those first stages 🙂
There are only 75,000 (give or take) chiropractors in the USA. The incidence of this abnormality is 0.03% of 78,500 children from a recent study. The chances of Hailey being born to a chiropractor are LESS than the incidence of the congenital deformity. How lucky is she?! From high school on, I was told that the chances of graduating college were minimal because I was a first generation college student that didn’t come from a wealthy family. My family taught me to work hard, and that nothing comes to you for free. Today I am a doctor. Less than one percent chance. . . maybe. The chances of Hailey being on several medications that would affect her ability to heal and function would be high if she hadn’t been born to a chiropractor. Her postural and skeletal deformities would be worse if she hadn’t been getting adjusted since birth. She would have more pain and more symptoms if I hadn’t sought out other natural health care professionals to help even though we didn’t know of this underlying problem. The chances of us finding the best doctors would be zero if I hadn’t gone to Atlanta (against Northwestern’s policy) for my last clinical and worked for the Colby’s. They are the doctors that have connected me to what I believe are the best chances at a nonsurgical outcome. If we hadn’t moved to Bismarck and started the chiropractic office, we would have no opportunity to leave work without taking a huge financial hit, even more than we already are. How lucky are we? How lucky is Hailey?
Don’t get me wrong. This is awful, and it sucks. This isn’t how we wanted her to grow up, but this is what we have to face. My chiropractic specialty is shifting to scoliosis and more specifically, how to maintain and prevent progression of congenital scoliosis without surgery. There is no chiropractic clinical data on this type of approach. Yet. Every event in the last four years has played a roll in giving us the best opportunity to give Hailey the best chance of having a life without surgery and without pain and further physical deformity. The chances of having the most ideal situation, training and resources are much less than one percent. I’m holding on to that and the fact that somewhere down the road, someone else’s child will benefit from my knowledge and training in this area. Instead of looking at this as though the worst 1% has happened, I am looking at this as though the best 1% has happened. Where would she be if we hadn’t triumphed through all of those unlikely situations over the past 3 years. If we can successfully navigate our way through all of THAT, there is no reason we can’t get through this.
I’m starting this blog as a way to keep friends and family updated on our lives and how Hailey is doing and also to share my experiences and training along the way as a chiropractor to other families that have similar situations. Most of the time, cases like these are not cared for through chiropractic and I want others to know that there are other options besides drugs and surgery. I want to be a resource for families to gain knowledge of other options and more information. Please keep us in your thoughts and send all the love and positive energy you have to spare our way. We may be bull headed and stubborn, but it is still a heart breaking and soul wrenching situation that is exhausting to manage.