Michelle Hlavek Carston
- What event caused your spinal cord injury and when did it happen? Please briefly describe where and how your paralysis affects you.
In 1993, while on vacation in Mexico, I dove into an unexpected sandbar in the ocean and struck my face. The result was a C5 complete spinal cord injury. This means I have no voluntary movement from my chest down, along with no use of my fingers, as well as some of my arm muscles. I still have some use of my arms, and have learned to utilize splints and adaptive devices. They help me with things such as typing, brushing my teeth, using a comb, fork, etc.
- What was your reaction to finding out that you were paralyzed? How have you adjusted to life after your injury?
When I found out that I was paralyzed, I initially assumed that it was just my legs that I could no longer use. I was 23 years old and had never known anyone who had been paralyzed, so I had misconceptions about my condition. I quickly learned that being a quadriplegic was a world of difference from being a paraplegic. I found out that I could no longer cough effectively when I had a cold. Since I was a drowning victim in salt water, I suffered from a really bad e-coli infection in my lungs. In the early days following my injury, a ventilator breathed for me, and I was later able to survive with a tracheotomy. Those were tough times, but once all of the hardware was removed, I learned to get assistance from someone pushing on my diaphragm as I coughed, which I still do today whenever I get a cold. It was really scary, but I dealt with each issue one at a time.
After seven months of being hospitalized and rehabilitated, I moved into an accessible condominium, thanks to my parents. It was a blessing to not hear hospital noises around the clock. I was finally able to get some good sleep, and began feeling like my old self. Friends came by and took me out to eat, shopping, movies and karaoke. I talked on the phone a lot and took care of household things and outstanding bills. I felt like I had a purpose again, and even accepted a job as a fitness instructor at a local Bally’s health club.
- When did you know that you wanted to become a mother? What were your initial concerns while you were contemplating this decision?
The feeling that I would one day become a mother was always there. As a child, I remember telling my mother that I wanted to have babies of my own. She assured me that I could have a hundred babies if I wanted when I grew up. After my injury, one of the first things that I learned from the nurses in the intensive care unit was that my body was still capable of carrying a child to full term.
I was married in 2004, and we agreed that we would try and have a child once we moved from my small condominium into a larger house, which was in the process of being built. My initial concerns were having a healthy baby. Once the baby was born and we knew he was fine, my concerns turned to why I was still passing out whenever I sat upright. It began one month into my pregnancy, and continues today. Doctors have not been able to successfully treat my condition.
Not being able to sit up without passing out has been a huge obstacle to deal with on a daily basis. It has been extremely frustrating to go from doctor to doctor and not hear any answers as to what I can do about it. I have spent endless hours researching my condition on the Internet, and have tried everything I could come up with, to no avail. On the positive side, being in bed has allowed me to be more physically accessible to Pierce. He enjoys climbing all over me, and now that he is older, we even wrestle! Since my computer is stationed next to my bed, it has become a wonderful teaching tool and something we can do together. My bed has allowed us to form an incredible bond, but I fantasize about how our lives will be enhanced if I am ever able to shed the bed and sit upright without passing out!
- Is there any general consensus regarding paralysis and pregnancy? Did you have varying opinions from doctors? Was there anyone advising you against pregnancy?
I really do not know what the general public thinks about paralysis and pregnancy. However, I do know that there is absolutely nothing wrong with my body. The connection from my brain to my limbs is not able to make its way due to the injury in my spinal cord, but that makes no difference in being able to carry a child.
My doctors were never alarmed or concerned with the fact that I became pregnant and carried the baby to full term. I chose the doctor that I did because he had delivered babies from four other paralyzed females. He gave me confidence in knowing that I was not the first, and certainly won’t be the last woman in my condition to have a child.
No, there was not one person advising me against getting pregnant.
- How did you feel both emotionally and physically during your pregnancy? Were there any complications during your pregnancy or labor?
Throughout my pregnancy, I was thrilled and couldn’t wait to meet my child. Emotionally, I was ready, but physically, it took a toll on me and I was exhausted. I did suffer from increased bladder infections, as well as gestational diabetes. I had a daily shot to thin my blood, too, since I had a pulmonary embolism prior to the pregnancy. I was an additional high risk because I was 35 years old, but everything wound up being normal. Other than being closely monitored, it really was an easy, normal pregnancy. The delivery was probably the easiest part of the entire nine months. I delivered vaginally, and only had to push for about ten minutes. With assistance from a vacuum device, Pierce, my son, was in my arms before I knew it. It was an incredible and miraculous experience!
- What were your preconceptions going into your pregnancy compared to the actual experience?
I must admit, I expected that I would continue to get around in my wheelchair the entire pregnancy, and life would roll on as usual. A month into the pregnancy, I had a huge wakeup call. I couldn’t sit up straight without passing out, so I stayed in bed where I knew the baby and I would remain safe. Otherwise, I really didn’t have any preconceptions since I didn’t know what to expect.
- How did Discovery/TLC become involved? Why did you want to share this experience with the world? What has the response to the show been like?
Throughout my pregnancy, many of my friends and family members asked me many questions about the pregnancy and delivery. I learned that there were many misconceptions about the delivery, too. Most people assumed that I would have to have a C-section since I was paralyzed. I contacted the Discovery Network because I felt it would be a great way to enlighten everyone as to what is possible following paralysis.
The response to the documentary has been wonderful. Folks from across the globe have reached out to me to tell me that my story inspired them. I have made wonderful friends and contacts through this experience, and am glad with my decision to share my experience with the world.
- Where can people view your special “Paralyzed and Pregnant”?
The show has aired regularly on the Discovery Health Channel, as well as on TLC since June, 2006. To find specific air dates, go to www.discovery .com. In the “Search” box, type “Paralyzed and Pregnant” and you will find links to both channel’s listings. Also, on the right side of that page is a clip of the show. You can also search for “Paralyzed and Pregnant” on the youtube website.
- What was your reaction to seeing your son, Pierce, for the first time? How old is Pierce now and how is he doing?
When I saw Pierce for the first time, he was lying on my tummy, still attached to me via the umbilical cord. It was one of those surreal moments where you cannot believe it until it is actually happening to you. I felt so happy and lucky, as if I was the first woman in the world to give birth and feel those feelings. I had waited my entire life to see my child, and in an instant, there he was, lying on my tummy, as perfect as he could be. I was absolutely elated!
Pierce turned three in October of 2008. He is a typical little boy and is doing great. He talks up a storm, and throws tantrums when he doesn’t get his way. His favorite thing is to sing and dance while playing his guitar in front of my full-length mirror. He attends preschool each day for 2.5 hours and adores his classmates. He certainly has quite a charming personality, and I love teaching him about the world and watching him develop.
- Do you have any advice or insights to share with other women who are paralyzed and plan to try to have children? Do you have any advice for couples where one person has a disability and they have a desire to have children?
My advice for other women who are paralyzed and plan to become mothers is to be prepared to change your entire lifestyle. I would give this same advice to any able bodied women, as well. I was used to my issues being at the forefront of my day-to-day life. Those issues still exist, but my child’s needs always come first. Whether it is forfeiting my physical needs to allow my caregiver to tend to my child, or the inability to have two minutes alone because I need constant caregivers to help me with him, it is a tough job. The baby stage is very precious, but it is also very brief. Decide in advance if this is the lifestyle for you. If your disability keeps you from being able to meet the child’s physical needs, then you must have someone there around the clock to help you. These are all things to figure out before deciding to get pregnant.
As far as couples who are planning to have a child, and one person is physically disabled, it is the same scenario. Plan ahead as far as who will be providing the child’s physical needs.
- What support system do you have in place with aids or with family/friends to help you with personal care and taking care of Pierce?
I have caregivers every moment Pierce is with me. We share one attendant who tends to both of our needs. It becomes extremely challenging at times, but for financial purposes, it must be this way. We have many wonderful neighbors who have agreed to help out in the instance that one of my caregivers is late or cannot work their shift. I keep a list of names and numbers handy in the event of needing emergency backup help. Having people who can help in a pinch is mandatory!
- Have you found any adaptive products to be helpful for activities of daily living, leisure activities, or parenting?
I use adaptive equipment in my daily life such as universal cuffs which help me to brush my teeth, hold a fork, and comb. I have a typing splint which slips over my hand and has a rubber tipped end. A v-shaped cuff on my phone receiver helps me to pick up the phone. A lift mounted in my ceiling assists my caregivers in getting me in and out of my wheelchair. A friend of mine devised a wheelchair accessible baby changing table. There are many products available depending on the need. Searching the Internet is how I have found the majority of the things that help make my life easier.
- Can you describe how hardship might have strengthened or inspired you to greater heights?
After my injury, I realized that I was the same person I was before my injury, and had the same goals and dreams. I focused on what I could still do, and not what I had lost. I conditioned myself to think positively, because negative thinking was too emotionally draining. Sure, there were and continue to be circumstances that set me back a few paces, but I realize that I am only here on Earth one time, and none of us know when our time will end, so why not live each day as though it is our last?
- What is the most important factor that has helped you to overcome challenges?
My daily mental conditioning to keep a positive outlook in all circumstances is what I attribute to helping me stay focused on what is important.
- Have you connected with other people who have had spinal cord injuries? If so, what effect has that had on you?
I have a lot of friends who also have spinal injuries, as well as other disabilities. Through each other’s trials and tribulations, we can learn what works and doesn’t work. I have a connection with these folks unlike any other, because we can empathize with one another, whereas able-bodied individuals can only speculate what our challenges must be like.
- Please share some of your interests/hobbies or occupation, if applicable.
My current interests and hobbies are anything and everything to do with Pierce. If I’m not spending time with him, I’m online researching everything from child development, to finding ways to keep him entertained. I figure I have one chance at giving him a meaningful foundation and a memorable childhood. I’m trying to make sure I do the right thing and have all of my bases covered.
- Do you live by a certain “motto” (saying)?
Where there’s a wheel, there’s a way!
- If you were speaking to a young person today with a disability, illness, or injury, what advice would you like to give them? What would you like to tell them about reaching for goals and achieving dreams?
Never give up. Set your goals very high, and envision them coming true. Make daily choices toward achieving your goals, and eventually, you just might reach them!