ONCE UPON A GENE - EPISODE 011 - Rollin' With Spina Bifida
Joining me today is Whitney Stohr, a master advocate for her son and others in the community. There's a lot to learn from her family and a lot of good information in our conversation.
EPISODE HIGHLIGHTS
Tell me about you son Malachi
He is almost 21 months old, adorable, the most social little guy you'll ever meet and he has Spina Bifida. Spina Bifida means that in-utero, very early in a pregnancy the spine of the baby doesn't form like it should. As a result, when the child is born, there's an open area on their spine. During the development later into the pregnancy, the nerves that go down the spine are open to the fluid inside of the placenta and to the air when they're born, causing damage to the nerves. It can cause numerous related disabilities, usually impairs mobility and often leads to Hydrocephalus, or water on the brain. Hydrocephalus is caused by the Arnold-Chiari malformation, which is where the spine is open to the air and it tugs the spinal column down, brings the brain down to the upper part of the neck and blocks the fluid that naturally occurs on the brain. This causes a buildup of fluid on the brain which requires surgery to place a device in the brain to help drain it.
When did you find out that Malachi had Spina Bifida?
We got our diagnosis just after my second trimester ultrasound where everything looked great and my regular OB didn't see anything. I had the quad screening and that showed an open neuro tube defect which is what Spina Bifida is. They brought me back in and sent me to a specialty clinic to do a high resolution ultrasound. I went into research mode to find out everything I possibly could about the condition. I feel like I didn't miss a beat in trying to determine what the next steps were.
Tell me about Malachi being born.
Malachi was born in January 2018 at 35 weeks. I was living in Yakima, about 2-3 hours away from Seattle. We were flown over by medical flight in the middle of the night and taken to the University of Washington Medical Center and rushed into the operating room for a c-section. They couldn't get the epidural to work, so they had to put me under. It was traumatic because I wasn't sure if I'd wake up and even have a baby. They put me to sleep, I woke up in my hospital room and my husband told me Malachi was fine, in the NICU and being prepared for a transfer. They wheeled him up in his incubator, I got to meet him for the first time, say hello and say goodbye and send him on his way. Malachi was taken to Seattle Children's Hospital and had surgery to close up his spine. For the first surgery, they brought in a couple teams to pull the muscle and skin and literally zip up his spine. If the spine isn't closed up soon enough, there's a risk of infection so the goal was to get him into surgery as soon as possible. He was born in the middle of the night at 12:38am and had the surgery mid-afternoon the same day. Malachi spent the first eight months in the hospital. He had five other surgeries in this time. He had spinal surgery on day one and brain surgery on day two to correct the Hydrocephalus. He was born with congenital heart defects, so he also had open heart surgery at two months old.
You're living in Yakima, so where are you staying and what are you doing for eight months?
My husband had to go back to work, so he was living in Yakima and commuting, working Monday through Friday and then coming to Seattle on the weekends. When Malachi was in the NICU and I wasn't allowed to stay with him, we were at the Ronald McDonald House, which was a godsend. Once he was moved down to a room, I lived in the hospital with him. It was a long journey to bring Malachi home. After his heart surgery, he started having a lot of trouble breathing, so before he could go home we had a tracheotomy and he became ventilator dependent. Part of our going home plan involved weeks and weeks of training on how to keep him alive. We were terrified to bring him home. In August 2018, we brought Malachi home to Yakima for the first time and it really kicked in then just how challenging it would be to be outside the hospital, trying to live a somewhat normal life and how many obstacles there were. Since then, it's been a learning opportunity every day.
How do you get out of the house with Malachi and all his stuff and get to an appointment?
Not very well. It's a mess. I follow all these other medical moms on Instagram and a lot of their kids have trachs and feeding tubes and I feel like they're my heroes and they're so much better at it than me. I feel like a hot mess all the time. Malachi has to have a giant stroller, which I call the magic school bus. It's a sit and stand stroller made for two kids, I put his ventilator on the bottom where a toddler would stand and strap it on with bungee cords. We put his oxygen tank on the bottom and we travel with a giant red emergency backpack that has all of his spare equipment in it. We also have all the regular baby stuff like diapers and food. We attach his feeding tube and cords to the stroller with a clamp to keep from rolling them over.
How is he thriving so far with his new therapist? Is he in a co-op with Birth to Three or is he still too young?
No co-ops or group therapies yet. We are hoping to, but the challenge right now is that it's cold and flu season and we're nervous to have him around other people. We'll be going into isolation in November until April or May. Hopefully by spring we can get him in a playgroup through the therapy center with other kids with disabilities and we're looking forward to that.
Can you tell me a little bit about what you've learned about being an advocate for Malachi medically and in general?
I'm such a loud mouth and always have been. I've never been afraid to tell people to stick it when they need to hear it. That probably suits me well in this case. It has been different because I don't have a medical background and there's been a huge learning curve and I'm still learning every day, but as medical parents we can be an advocate in two ways. We can be an advocate for our kid, which is a given. We can also use our experience and the knowledge we gain to be an advocate for the community and for all kids and all people with disabilities or medical diagnosis. The disabled community is considered the largest minority group in the US, so whether we have disabilities or not, if we're going to be advocates for anything we have to include advocacy for disabilities. Opening my mind to that world has shown me how much privilege I have to not have to be aware of the issues that affect the disability community. I didn't have to be worried about good sidewalks or accessible parking spaces or accessible restrooms because it didn't affect me. A big part of this advocacy has been educating myself on these vast issues that affect people and kids with disabilities. It's been a practice in humility for me because I've had to accept that I was naive to these issues, but as an advocate it was a kick in the pants. It's important for medical parents to use their voice and to get involved however they can. There are ways that every single one of us can get involved and because we have this unique experience, it's so important that we all do get involved.
Can you tell me about the new organization you are a member of now?
It's called Parent Institute for Engagement (PIE) ran through Washington State, the same program that runs the early intervention services statewide. They wanted to get more parents engaged and they wanted to give them the skills they need to advocate. This is not just advocacy for your child, but advocacy for the community, focused on a broader level. It's a year long leadership program, with seven people in my cohort and we meet once a month alongside the state interagency coordinating committee, which are government appointed people and representatives from different agencies. They come together once a month to talk about improvements, problems or how to make recommendations to state agencies on areas that need to be addressed. We have our meetings and learn specific skills. Last month, we learned how to tell our story for an advocacy purpose. Then we attend the meeting with the SICC where we get to meet all of the representatives and hear about ongoing problems. PIE is a group of really dedicated parents who want to be active advocates in their community and it's so fantastic. Anyone can apply, so I encourage other parents who want to be advocates and who want to learn those skills to apply.
What are your advocacy goals over the next year?
I want to get more involved. Before Malachi, I didn't know much about disability issues or even issues happening in our own state and there are a lot of issues. I hope that through the PIE program and through other ways I've gotten involved in the community because of Malachi, that I make connections and get involved in the programs and campaigns that these groups are leading. Hopefully I can add my voice to the masses and we can make some change.
How hasn't having Malachi changed you? How do you feel it's changed your entire family bringing someone like Malachi into the world?
Having a kid like this, being in and out of the hospital, seeing how much these kids go through just so they can wake up every day with a gigantic smile on their face is really profound how it affects you. I think it affects everyone you share your story with, which is why we do share our story. It's made me more focused, more of a serious and driven person. It's made me incredibly passionate about causes that are close to my heart. For the rest of my family as well, we've become very involved in issues related to Malachi's conditions. We've become a lot more outspoken about issues affecting kids like Malachi or kids with any other condition. Overall, your sense of empathy grows.
CONNECT WITH WHITNEY
Whitney Stohr on Facebook: https://www.facebook.com/whitney.stohrhendrickson
Malichi’s Journey on Instagram: @rollin.w.spinabifida
Instagram: #spinabifida #redefiningspinabifida #hydrocephalus
LINKS AND RESOURCES MENTIONED
Washington State Early Intervention
Parent Institute for Engagement (PIE)
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