WHEEL LIFE STORIES PRESENTS
PEOPLE of the WHEEL WORLD
What is Spina Bifida and Hydrocephalus?
“Spina Bifida” literally means “split spine.” It is a permanently disabling birth defect that occurs when the spinal column of a fetus fails to close completely. This can happen at any point along the spine.
There are several types of Spina Bifida — the most severe type being Myelomeningocele. Myelomeningocele results when part of the spinal cord and nerves come through the open part of the spine while the baby is still in the womb. This causes nerve damage and other related conditions, including hydrocephalus.
Hydrocephalus is a condition in which there is an abnormal accumulation of fluid — known as cerebrospinal fluid (CSF) — in the ventricles of the brain. Hydrocephalus can occur for many reasons, and can develop at any age, but the large majority of babies born with Spina Bifida also have Hydrocephalus caused by another condition known as Arnold Chiari Malformation. Basically, along with the spinal cord defect, part of the brain stem is pulled downward and descends into the cervical spine. This essentially creates a blockage preventing CSF from draining quickly enough. Rather, the fluid builds up in the brain, increasing pressure, which can be deadly if not quickly addressed.
In most cases of Hydrocephalus, a medical device, called a shunt, is placed in the brain to drain the stored fluid, usually causing it to flow down a tube ending in the abdominal area. Shunts are life-saving devices, but they also regularly fail. And when they do, it becomes a medical emergency requiring brain surgery to revise the failed device.
Malachi was born with T12/L1 to S5 Myelomeningocele. He underwent his first surgery — to close his spinal lesion — when he was less than 24 hours old. On his second day of life, he had a shunt placed in his brain to treat Hydrocephalus. In May 2018, Malachi had a tracheostomy surgery and is currently trach/vent dependent, and also had his first shunt revision surgery that same month. Due to the nature of that device, we expect more revision surgeries in the future.
Malachi has shown very limited movement in his legs. While we will always work to develop and strengthen his legs as much as he is able, we know that a wheelchair will definitely figure prominently in his life.
What advice would you give to parents that have a child with special needs?
To new parents that have a child with special needs, I would say, take a deep breath and learn to roll with the punches. I honestly think it is the only thing you can do. That doesn’t mean take everything lying down or fail to advocate on behalf of your child; but, I learned very quickly that everything is going to happen on your child’s time. You cannot force their growth and development. You cannot wish away their diagnosis. This is their life. This has become your life. Accept it. Cherish it. It is a different life, but it is an amazing one.
I believe most people go into this whole parenting thing with a lot of expectations. They envision their kid a certain way. They want them to do the same things they did growing up. They think about taking them to soccer practice and helping them with homework; teaching them to ride their first bike or growing up and becoming a doctor. It’s hard not to have certain expectations. And for the majority of people who end up having typical kids, they don’t realize the trouble of setting those expectations and imprinting them in your mind.
Kids with special needs force you to reevaluate those expectations. Like us, some people receive their child’s diagnosis prior to actually giving birth, so, from the get-go, you bring this child into the world knowing that life will be a little different. Others have to deal with those emotions later on when they do receive a diagnosis. But, no matter when that point comes, as a parent, you really need to just wipe that slate of pre-conceived expectations clean. And that is a second piece of advice I would give to parents.
Don’t compare your child to other kids. It’s so incredibly difficult not to do this. I know. I understand, trust me. But try not to do it. Your child is who they are, and they will be who they’re meant to be. Follow their lead. They will blaze their own path. Just don’t hold them to expectations that no longer fit with the reality of life. Rather, find ways to help them maximize their potential and become the best version of themselves — whatever that looks like.
What do you love most about Malachi?
His smile and his overall happy demeanor. This amazing little guy has been through so much in such a short amount of time, yet he is still the happiest baby I’ve ever seen in my life. He wakes up smiling; he falls asleep smiling. He smiles and laughs all day long. He rarely cries. He is just happy about life.
How has having a child with a disability changed you and your family?
Immensely. It has changed everything about how I see the world and other people, how I see our built environment (our streets, sidewalks, and buildings), how I view different policy issues and upcoming elections, how I analyze movies and television shows. Everything about me is different now.
Here are some specific examples…
First: I view my environment in a different way. Before Malachi, I viewed broken down sidewalks and inaccessible buildings simply as infrastructure in need of repair or retrofitting. And that was when I noticed it at all! Now, I see those same decrepit sidewalks and old buildings as a denial of my son’s right to access and his right to utilize public facilities to the same extent as those without disabilities. I notice inaccessible places, and I see them as a civil rights issue.
Second: I have become more open about my thoughts and feelings, and also, in my willingness to tell the story of our lives. I’ve always been a fairly private person, and I never liked to share a whole lot about my life with people. However, when we first learned of Malachi’s diagnosis, it was my dad — Malachi’s grandpa — who encouraged me to start posting our story on Facebook. I was hesitant because I didn’t want people to ask uncomfortable questions, or feel sorry for us, or look at him with pity in their eyes. I wanted to avoid all that. I wanted to protect him, and protect my family, from that. But, the more I shared with people, the more I realized that other people (more people than I ever realized) have stories of their own that span the gamut of emotions, and it’s good to share those stories and to talk about our experiences. We can learn so much from each other! And I found that when you begin sharing your story and opening up about your life, people show up for you in unexpected ways. There’s that saying that “it takes a village to raise a child,” and I really believe that’s true; but, I think there’s more to that — I think every single one of us needs a village of our own. And, the more open I’ve become about my life, his life, our life… the more our village has grown.
Third: Because of Malachi, I have a different, more expansive, understanding of terms like “privilege,” “inclusion” and “representation.” Throughout my adult life, I have always tried to be mindful of these issues and to remain cognizant of the ways in which I am very privileged. However, I admit that before Malachi, I didn’t often factor physical or mental ability into that equation. It’s not that I didn’t think it was important. I just didn’t think much about it. I think when most people consider “privilege” and “representation,” they think of race, gender, ethnicity, national origin, etc. And in no way do I want to detract from the importance of that, but I do feel like disability gets overlooked in that regard. As Malachi’s mom, I see every movie and television series and clothing advertisement in a new light. Now, I think: “How are people like Malachi being represented?” There has been such a big push to include people of different demographics in media — and that’s a great thing! You can now look at most product advertisements and see models of all different races… But, still, you rarely see included a model in a wheelchair. Because of Malachi, I now notice that aspect of diversity and inclusion, or, rather, the lack thereof.
Fourth: I feel like I’ve become more vocal about all issues where I see injustice. Before Malachi, I was an advocate, I had strong opinions, and I wasn’t afraid to share those opinions. But I was also careful not to be vocal to the extent of creating division when I didn’t view it as an absolute necessity. I was perhaps a nicer person, but not the “better” person that Malachi has made me. Going through this experience of becoming a “special needs mom” has lit a fire in me. I no longer care about being divisive. I can no longer stomach bad policy and unethical politics; and, as for those who support those bad policies, I just cannot accept their viewpoints as a “difference of opinion.” When something is wrong, when it is unethical, or when it is unjust, I can no longer be quiet. Policy decisions and political elections have a direct impact on my son and my entire family. I will not sit quietly when I see people playing games with our lives. And I will forever be thankful to Malachi for helping me find my voice.
As for my family, they’ve changed as well. In ways that are difficult to really describe, I feel like everyone has developed a deeper understanding of what it means to be inclusive and accommodating of others’ needs. I’ve also noticed my family becoming more political and definitely more outspoken on certain issues. It’s one thing to support a certain policy when the impacted population is basically hypothetical in your mind — when you don’t actually know anyone that would truly be impacted — but you still support a policy because you feel it is the right thing to do. But it is just different when you personally know the people who will be impacted by bad policy and you understand just how drastically their lives may be effected. All of sudden, politics becomes very, very personal, and the need for change becomes more urgent. That is how I’ve seen my family change.
The truth is Malachi has changed us all — everyone who knows him — in innumerable ways, and we will never be the same.
Is it difficult finding resources and programs to help assist with Malachi’s needs?
Yes and no. Malachi spent the first seven months of his life at Seattle Children’s Hospital, and we couldn’t have asked for better care. They saved his life, and we didn’t owe a penny. Because he was in the hospital for such an extended time, he fell under an exception to the income requirement in Washington to qualify for Medicaid. So, between Medicaid and our private insurance, we didn’t owe anything additional for that initial stay in the hospital.
The truth is, between me and my husband, our income is considered too high to qualify for most social programs. And that is absolute crap! We fall into this middle-class group of people, who have kids with special needs, who make “too much” to qualify for financial assistance programs, but don’t make anywhere near enough to actually be able to afford to pay out of pocket for the medical care and services that their kids require. It is quite the rock-and-a-hard-place type of situation.
Before Malachi, I naively assumed that children (or anyone), anywhere in this country, with a disability would automatically qualify on their own for programs like Medicaid and SSI… However, while in the hospital, I learned that is simply not the case. Fortunately, the Medicaid exception we received due to his “long term” admission in the hospital lasts for a full year. So, we do have Medicaid until December 31st of this year. After that, we will rely completely on my private insurance, and that will impact the number of therapy visits (PT, OT, Speech, etc.) he is allotted per year. It also means we will be paying significantly more out-of-pocket for any adaptive equipment or extra services. There will be a gap of a couple years from the time at which he loses Medicaid coverage to the point at which we can qualify him for other financial programs.
Because Malachi has a trach and is vent-dependent, we do receive coverage for up to sixteen hours per day of in-home nursing. That has been a lifesaver! And, actually, setting up nursing was one of the discharge requirements for Malachi. If we hadn’t been able to find in-home nursing, we’d still be in the hospital today! Some kids are. We were lucky because of where we live geographically in Washington State. In larger cities, nearer to Seattle, it is harder to find home nursing. We live on the other side of the state, in a smaller city, where we have more options.
Of course, living outside a metropolitan area also presents other challenges. In bigger cities, there are more therapeutic programs available and more opportunities to participate in adaptive sports leagues or diagnosis specific summer camps. Those programs just don’t exist in more rural areas.
But overall, I feel like the most frustrating thing about locating resources and programs for Malachi is the discrepancy in coverage that exists. And this isn’t just about Malachi; this is about every person that requires medical care and has specific medical needs. For us, the fact that we make more per month than some arbitrary income cut-off set by some government agency places limits on our access to medically beneficial programs and services for our son. For others, the specific state they live in can dictate the amount of coverage and type of services available to them. The fact is, the current state of affairs in this country as it relates to health insurance coverage and access to government programs is completely off-track and in dire need of reform.
What do you want the world to know about Malachi?
I just want the whole world to meet this awesome little guy! In his short life, he has already endured so much. He is so strong and so brave and so tough. He has so much grit stored up in that little body of his. He is the most amazing person I have ever met. I want the world to see that. I want the world to see his personality, his smile, his charisma, his intelligence; and to see beyond his physical impairments. He has so much to offer the world.
What are your dreams and aspirations for him as he grows?
I just want him to be happy — whatever “happy” means to him. I want to give him opportunities and open as many doors for him as possible. I want him to find things he loves doing, and I want him to have the opportunity to pursue his own goals.
I also want to see more funding for medical research that produces new treatment options for him, including one that can replace the need for a shunt to treat Hydrocephalus.
“I love Thai food! Green curry is my favorite. But pierogis and quiche are my guilty pleasures.”