This blog will always be first and foremost a place where every kind of mom can share her story. Whether interviewed directly or a write-in, we want this to be an outlet where moms can have a safe space.
A couple of weeks ago another mom nominated Whitney to be a part of our Mom of Fame. We were so excited to get in contact with her and quickly learned that she is a very warm and open person. She is such strong woman who had beautiful words to share.
Whitney and her family have been through a lot more than most of us will ever see in a lifetime. Her son, Malachi, was born with a severe form of Spina Bifida. For the last seven months they have been living at Seattle Children’s Hospital. At the end of this month they get to go home.
It’s hard to share something so hard and personal with the world and we want to thank Whitney for doing just that. There is no one more deserving to be added to the Mom of Fame.
1. Tell us about your family and son (background information for people that are reading)
Hi! My name is Whitney Stohr. I am 32 years old, and I currently live at Seattle Children’s Hospital.
Or, at least I have for the past seven months or so while my son Malachi has been in-patient and receiving treatment.
My entry into motherhood began on January 18th of this year, when Malachi decided he was ready to enter the world five weeks early, and I was emergency life-flighted from Yakima, WA, where I live with my husband, Jason, to the University of Washington Medical Center in Seattle. I was rushed into the Operating Room and had a quick c-section under general anesthesia. Malachi was born at 12:38 a.m. on January 19th, 2018, and was transported to Seattle Children’s a few hours later. We haven’t left yet.
But let me back up a bit.
Jason and I met as undergraduates at the University of Montana in Missoula. He is originally from Montana and had just re-entered his bachelor’s program after serving in the U.S. Army in Iraq. We got married in 2009 and lived in Washington, D.C., for several years before moving back to my hometown (Yakima) a little over two years ago. Jason currently works in agriculture, as a fieldman for a pesticide/fertilizer company, and I run a small non-profit promoting downtown revitalization and economic development.
We bought our first house together in 2016 where we live with our two dogs, Marmalade and Neptune.
For a long time, we didn’t know if we could have kids. It just never happened, so we thought maybe it wasn’t meant to. And we were okay with that. We thought maybe someday we would look into adoption, and I think someday we might still… But last summer, we found out I was pregnant. Our whole family was thrilled. There was talk of youth sports and science camp and college — all for a kid that none of us had actually met. We began buying clothes and planning the nursery. Because, at that time, those things seemed like the most important things.
Then, our world came crashing down. At Week 17, I received a call from my OB. He told me that a blood test had come back showing increased probability for a baby with an Open Neural Tube Defect, and suggested that I schedule a follow-up appointment at the local at-risk clinic. It was during that follow-up appointment, at Week 19, that we received a diagnosis. Malachi would be born with Spina Bifida.
If you’re like me, and don’t work in the medical field and have never had a family member with a disability, then there’s a good chance you don’t know much about Spina Bifida. I had no clue. We were told at that initial appointment that Spina Bifida is a congenital birth defect where part of the spinal column fails to close properly, leaving the baby permanently disabled. Malachi was diagnosed with the most severe form of Spina Bifida — Myelomeningocele — which meant, we were told, that Malachi would also likely suffer from Hydrocephalus, a build-up of fluid on the brain, as a result of a brain malformation (known as Arnold Chiari Malformation Type II) caused by Spina Bifida.
These diagnoses meant Malachi would need to undergo a surgery in the first 24 hours of life to close his spinal defect. Then, he would need to undergo a second surgery the following day to place a shunt in his brain that would help drain fluid from his head and prevent a life-threatening build-up of pressure. Oh, but, by the way, we were told, he would need that shunt for the rest of his life, but they are notoriously unreliable and fail constantly. And each time his shunt fails, it is a medical emergency and requires another brain surgery.
On top of this, we found out Malachi also had a Ventricular Septal Defect (VSD) and Atrial Septal Defect (ASD) — basically, two holes in his heart — that would require a third surgery… open heart surgery. And, here’s the icing on the cake: Because of his Spina Bifida, I would need to give birth via c-section and would still be in the hospital — a different hospital — when Malachi underwent his first two surgeries. I couldn’t even be there with my baby.
So, the plan was always to give birth in Seattle. What we didn’t plan for was also being diagnosed with IUGR (Intrauterine Growth Restriction) and him deciding to come weeks before his due date.
And so here we are.
Malachi had his spinal closure surgery on January 19th, and his shunt was placed on January 20th. In March, he began showing signs of heart failure and underwent open heart surgery to repair his VSD and ASD on March 22nd. As a result of his heart surgery, he suffered vocal cord paralysis and began showing signs of breathing obstruction (basically, turning blue). So, on May 7th, he had a tracheostomy and is currently trach/vent dependent. Following that surgery, he developed a kidney infection and sepsis, and a shunt failure led to his first revision surgery (brain surgery!) in June.
There were several days where we weren’t sure he would make it….
Honestly, even telling the story is exhausting. Everything about the past seven months has been exhausting.
But, we’re moving forward… because, what else can you really do?
Since Malachi’s tracheostomy, we’ve completed training in how to care for him and have had to recruit a team of home nurses that will go everywhere with us. We are just now finally preparing for our first discharge from the hospital… if all goes according to plan (*knocks on wood*).
But we’ll be back here. A lot. For follow-up appointments, MRIs, trach/vent clinics, and more shunt revision surgeries. The hospital will be a big part of our lives from here on out.
2. What are your three strengths when it comes to being a mother?
For me, motherhood looks different than I think it does for most women. I would like to say that my three greatest strengths as a mother are traits like being loving and caring and comforting. I hope that is true of myself. I believe that it is. However, because of our situation and the circumstances surrounding my ascent into motherhood, our world is a little more complex and, as a result, I now take pride in qualities that I wouldn’t have probably considered to be my greatest strengths before Malachi, but have since become just that.
I think one of those strengths is the fact that I can find humor in everything, even if it sometimes comes out sarcastic and cynical. I am entirely aware that humor is my coping mechanism, and I’ve come to embrace it because, otherwise, in this situation, all you really want to do somedays is curl up in a ball in the corner and cry, and feel sorry for yourself, and contemplate how the hell your life got to this point. But, I think, there’s power in feeling those emotions and acknowledging them and coming to understand that it is totally normal to feel that way and it is absolutely expected that you do. And, if you happen to be the type of person that can, at the same time, make a serious situation a little less heavy, or the type of person that can laugh at the time in your life when you are most afraid… well, I believe there is power in that too.
A second strength of mine I have come to love is my relentlessness. I do not give up on things. I will push and push and keep on pushing. When we were told about Malachi’s diagnosis, I spent the next few months devouring any information I could find. I read medical journals and countless articles about recent medical breakthroughs, studies and trials. I stalked parent chatrooms and Facebook groups for hours. And it was no different once Malachi was born. Every time he has faced a challenge, or there has been a question about his health, I have returned to the medical journals, the studies, the trials. I do not give up, especially on him.
A third strength is my ability to see beauty in all things. I take joy in unique experiences and diversity in people, in art forms, in architecture, in viewpoints, in life experiences… in everything. I enjoy the “square pegs in round holes” type of people. Malachi has a permanent disability. He will undergo perhaps dozens of surgeries in his lifetime. His life will be different than most. It is my fear that other people outside of a hospital environment will define him by his disability — that others will see him as “broken” — but, in him, I see nothing but light. He has the most amazing, unique, extraordinary spirit, and, even now as an infant, that light is apparent. He is different, but he is beautiful.
3. What has helped you remain positive through everything you’ve been through?
Nothing about having a sick, or medically complex, child is easy — especially when their diagnoses require them to actually stay in the hospital for extended periods of time. Most everything about hospital life is abnormal and disheartening and soul-crushing and every other type of negative emotion that comes to mind. Nearly every day is an emotional rollercoaster, and you are hyper-aware of any change in your child’s temperament, and, even on the good days, you’re prepared at any moment for the rug to be pulled out from under you.
But even in those dark moments, the goodness of others shines through, and it keeps pushing you along. It is sometimes the greatest source of positivity you can muster.
It wasn’t until I began sharing Malachi’s story that I realized just how big our village is and how many people love us, and support us, and care for a baby that they’ve never even met. When we were first rushed to Seattle and news spread of Malachi’s birth, we were amazed at how many letters of support, greeting cards and gifts we received, even here in Seattle, and many from people that we hadn’t seen in years. When people discovered that we loved to read together, they sent us books. When they learned that Malachi can’t wear certain baby clothing due to all his wires and monitoring equipment, they went shopping and sent clothes that he could wear.
But it wasn’t just people in our own circles. It was total strangers that reached out — friends of friends that heard our story and had gone through a similar experience. It was the ladies in the community that make quilts for every child that stays at the Ronald McDonald House in Seattle. It was the women who offer free massages and haircuts to the parents of sick kids, the man who goes room-to-room playing his ukulele to the tune of “Somewhere Over The Rainbow,” the team of volunteers that bring their therapy dogs to visit, and so many more. It was the social workers that make sure you have access to all the resources you need so you don’t fear losing your home to bankruptcy. It was the nurses that showed up every day with a smile on their face, who were always willing to sit down and listen to my concerns about my son and my fears about going home and leaving the relative safety of the hospital. It was the medical student that held my hand when I was afraid.
And, then there are these amazing organizations that offer so many services to families and kids with special needs, and you don’t really know anything about them… until it’s your kid that has that diagnosis. It’s the amazing family behind Bella’s Bumbas, a non-profit out of New York that makes tiny wheelchairs for toddlers. And, it’s Songs of Love, a group that composes and produces special songs for kids with lyrics that include their family members and all their favorite things in life. And all of these were given freely.
These amazing people have helped immensely — more than they will ever realize. They have played such a huge part in my ability to remain positive in light of our circumstances.
The one other person that has helped me remain positive through all this is Malachi himself. That little boy is absolutely amazing. He has gone through so much in such a short time, including five life-saving surgeries; yet, he wakes up with a smile on his face. He laughs uncontrollably and stares into your eyes in the most loving way. His smile has helped me maintain my positivity and my hope for the future. The thought of showing him new things and helping him reach milestones and explore the world around him, keeps me moving forward.
4. What do you want your child to learn from you?
This question made me laugh because I think I’m learning more from him than he is from me. And I don’t know if I see that really changing in the future. I have a feeling that he will be my greatest teacher.
Maybe it is thinking too highly of myself, but I do hope that I can teach Malachi to see some good through the bad and light even on his darkest days. I hope I’m able to show him the extraordinary light he has inside himself. I hope he learns from me the importance of cultivating his interests and following his passions in life. I want to teach him to have empathy for others and about the importance of giving back to his community. I want him to learn to advocate for himself, of course; but for others, as well, and for any cause that sets his soul on fire. But, mostly, I hope I am able to convey to him that the single, most important thing in life is love — love for your family, your friends, your pets, your job, your hobbies, and on and on. If I can teach him how to create a life that he loves, then, in my eyes, I have succeeded as a parent.
5. What advice would you give mothers in similar situations?
The piece of advice I most often hear is that “you need to take some time for yourself,” or “remember: self-care is important.” For those parents who are able to step away from the hospital, or go to the gym, or get a full eight hours of interrupted sleep every night, good for you. Seriously. I envy those people. I’m just not one of them, and that’s okay too if you’re not. So, I won’t give advice in self-care because, from where I’m standing, it’s the pot calling the kettle black.
Here’s what I would say: Buckle-up. This is the single, most challenging ride you will ever take. Hospital life is hard. Having a kid with serious medical issues is harder. It is emotionally draining, all the time. But it is absolutely, without a doubt, worth it. Malachi is the most amazing thing in my life. He is worth every single second, of every sleepless night and every exhausting day.
So, through the daily struggles, try to hold on to the positive things, and try to find a reason to laugh. Laughter helps.
I don’t know what our future will look like. Honestly, I don’t even know what life with Malachi outside the hospital looks like. I hope the future is bright, for all of us. And, thankfully, there are people out there able to give me advice!
6. If people want to get involved or want to help, where should they start?
I can share from experience the gratitude that families feel when others donate or volunteer in the hospital. Here, at Seattle Children’s, people donate crocheted hats, handmade quilts, and clothing. Volunteers provide services to both the kids and their family members. And everything that is given is deeply appreciated. Whether volunteers dress up as Star Wars characters, or come to make Valentine’s cards with kids, everyone can give something of themselves to help others. So, for those that want to help, I encourage you to find the nearest Children’s Hospital, or a regular hospital, or even a nursing home, and give of yourself. Donate your time, your energy, your special gifts and talents. It is one of the best investments you will ever make.
For anyone interested in learning more about Malachi’s specific diagnoses, I would suggest starting with the National Spina Bifida Association (spinabifidaassociation.org/) and the National Hydrocephalus Association (www.hydroassoc.org/).
Lastly, if you want to follow our story, you can find us on Instagram: @WhitneyStohr and @rollin.w.spinabifida.
I want to thank everyone for listening to our story, and especially momfaming for reaching out. It’s been a long road and a tough year, and it means so much to us to have the support of so many. Peace to you all.