November 14th, 2012 by admin
Maya Brown-Zimmerman is an outspoken Latina mother of two special-needs children. She has Marfan syndrome. Maya earned a Masters in Public Health from The Ohio State University and has particular interests in patient advocacy for those with chronic illness. She writes for WebMD and teaches the Valiants in her ward.
You write the blog “Musings of a Marfan Mom” and are on the board of the National Marfan Foundation. Can you explain what Marfan syndrome is?
Marfan syndrome is a rare, life-threatening connective tissue disorder. Connective tissue is the glue that holds our body together, so people with Marfan syndrome can be affected throughout their body. It affects the cardiovascular system, particularly the aorta, which is the main blood vessel running from the heart. The aorta can grow to be too large and develop weak spots called aneurysms, which, if not monitored, can tear. That tear, or dissection, of the aorta can kill you. Marfan can also cause issues with the eyes, the lungs, the skeleton, the skin, and the nervous system.
How did you come to be involved with the Marfan community?
I was diagnosed with Marfan syndrome at age 8. I remember my diagnosis vividly. My mom took me to a pediatrician because I seemed too weak to do things other kids could do. I couldn’t ride my bike. I couldn’t run. I didn’t seem to have any coordination and I would get tired easily. So she told the doctor she wasn’t going to leave until he told her what was going on.
I remember him pulling out a measuring tape. He started taking measurements and asked a few questions. Then he stopped and looked at her and said, “I am so sorry. I should have caught this sooner.” He told my mom he believed I had Marfan syndrome and referred us to the cardiology and genetics clinic at the children’s hospital for further evaluation.
I remember being really frustrated because I felt like the doctors were talking over me to my parents. I felt like I was capable of understanding what they were saying. I said to my mom, “They’re treating me like a kid!” Which I was. I was eight! But I wanted to be part of that conversation.
I could tell that my parents were struggling with the diagnosis. I remember them struggling with whether they “gave” me the syndrome and what they were going to do about handling my diagnosis. I didn’t realize the potential seriousness of it until later when I had to stop doing activities that I loved like horseback riding and basketball.
Why did you have to stop?
With Marfan syndrome you have to be careful of any contact to the chest or the eyes, also of activities where you start and stop frequently, which you do with basketball. You can’t do any contact sport, or sports that are going to get your heart rate up. Most competitive sports are out.
The doctor had told me that I needed to stop horseback riding. But my father used to be a cowboy and had grown up riding horses, and he and my mom knew how important horseback riding was to me, so they decided they weren’t going to follow the doctor’s advice. Within a few months of getting diagnosed, I was thrown off the horse. I got pretty banged up, just bruises and things, but it scared my parents into believing I needed to follow the doctor’s activity restrictions—no horseback riding, no basketball.
Before all the activity restrictions, I thought having Marfan was kind of cool because they told my parents that it was what Abraham Lincoln probably had. I wanted to tell everyone at school. “I have the same thing that Lincoln had!” But my mom told me that I shouldn’t tell anyone, that it wasn’t anything to talk about.
And yet now you are very open and public about all things Marfan. How did you make that transition from privacy and even secrecy to openness?
As a pre-teen I began to get really angry. I was getting made fun of at school all the time. One of the symptoms of Marfan syndrome is a disproportionate torso. I was taller at 12 and 13 than all of my teachers, let alone all the other kids. I was shockingly skinny. When I was thirteen, I was almost six feet tall and I weighed 90 pounds. That got a lot of attention. People would make lots of comments and call me anorexic or ugly. I couldn’t participate in gym class with the other kids. At that age, you really want to look like everybody else and be like everybody else.
My mom noticed that I was becoming angrier and angrier and suggested that I write my doctors and ask if there were any other patients with Marfan syndrome. So I did, and I eventually heard from a counselor at the hospital who said that there was a local group with a girl my age, and there was a meeting coming up. My dad was very reluctant to have me go. He had a cleft palate and had been made fun of a lot growing up. So my parents weren’t sure that they wanted me to associate with people who might look really different.
I remember my dad taking me to the meeting and sitting in the parking lot and saying, “You know, I need to prepare you for what you’re going to see. These people might have deformities. They may look really different. They may be scary. Are you sure you really want to go?”
I said, “But Dad, that is what I look like.” That’s how I saw myself.
By the end of the meeting my dad had completely changed his mind. The girl my age was there and we hit it off. Sometimes there are people in this world that you were predestined to meet. It was like we’d always known each other. Talking to someone else my age who had such a positive view of Marfan syndrome was an eye-opener for me. Marfan is a spectrum syndrome, so people can be very affected or only mildly affected, and she was much more severely affected than me. She had overcome all these trials and still had a very positive view about herself, her mission on earth, and her relationship with God. She was a great example.
Outside my group of girlfriends at Church, I didn’t know other kids my age who were very religious, and it was really nice to have another friend who also had a strong faith. She knew that the trials we have here are just here and that they’re for a purpose. She felt like she could use the things that she had learned to glorify her Heavenly Father. I started thinking, I guess I don’t need to look at Marfan syndrome as some kind of curse.
We would email back and forth every single day, but about a month later she passed away from an aortic dissection. It was devastating to me. My parents worried that I would be afraid that I was going to die, but I knew that she and I were in different places in terms of severity. What was scary to me was that someone could know as much as she did about Marfan syndrome and yet at the end of the day they were still in the hands of their physician. She had known that she was having a dissection, and she still passed away.
I decided that I didn’t want anyone else to die from Marfan syndrome. At age 13, that is obviously an unrealistic goal. But I decided that I needed to become informed, and once I had done that I could move forward to inform other people. So the next year I went to a conference that the National Marfan Foundation puts on every year. I got to meet other teens my age. That was really a life-changing experience as well.
And now you volunteer with the teens in the National Marfan Foundation!
Yes. I run the teen program for NMF. I started helping out in 2006. It’s so much fun. When I came to conference as a teenager, there were fifteen of us, ages 12 through 23. This year we had 107 teenagers ages 13-18. So the program has really blossomed. I learn so much from them. They are such a group of strong, smart, funny teens. We do workshops and activities, oversee the teen website, and of course plan the conference. We plan all the conference activities so that the most severely affected teen can participate to the full extent. We want them to have a weekend where they can feel like a regular teen and not a teen with something “wrong” with them.
The prognosis of your original diagnosis was very serious, and yet you’ve grown up to marry and have your own family. Tell me about them.
I started dating Mark pretty soon after I got to college at Case Western Reserve University. I approached it just as a casual relationship, but it became more serious, and I thought, “I don’t know if he’s ever going to take an interest in the church. He really likes coffee.” Over the summer, he would email me every night or every morning pages of questions about the Church. Really difficult ones. I would spend all day, when I wasn’t working, in the scriptures or talking to my old seminary teachers or members of the bishopric to get answers and at night we would get on chat and I would answer everything that he sent. The next day it would start again. I found out later he was trying to convert me to Catholicism, but after a few weeks of getting all of these answers from me, he realized that he was developing a testimony of the Church. By the time we got back to school in the fall, he asked to come to church with me and to meet with the missionaries. His parents asked him to wait a year to get baptized to be sure that was what he really wanted to do. So he did wait a year and then he was baptized and we were married about a year and a half after that.
I didn’t know if I could have any biological kids, because of the stress pregnancy and delivery would put on my aorta. And knowing that we had a 50% chance of passing my Marfan syndrome to a child makes having biological kids really controversial. On some of the Marfan communities online, people say, “It’s a sin to have a baby. Why would you put this on your child?”
When I first got pregnant, it was hard for our families, both because of a concern for the baby and a concern for my health. My mom was really upset when I called and told her I was pregnant. I had told her ahead of time that we were going to check with the doctors and get all my specialists to approve my pregnancy. I think she just didn’t think it was actually going to happen. She was thinking of the time when she was at the doctor with me when I was 8 years old and the doctor said that the average life expectancy was middle-age. The whole outlook and expectation back the was different. So when I called and told her that I was pregnant, her response was, “Do you think I’m supposed to be happy about this?” But science and medicine have changed. With proper management, patients with Marfan now have a normal life expectancy.
It was really difficult feeling that not all of our family was on board at first but I still had a feeling of peace that this was exactly what we were supposed to be doing. A lot of people didn’t expect us to have a second child, but we felt very sure that’s what we were supposed to do. So we always just let prayer guide our decisions and had the faith that it would work out.
While we were still in the hospital after I had Julian, our second, I said to Mark, “There’s one more baby.” My doctor had already come to tell me I couldn’t have more kids. But I’ve known since college that I wanted to adopt. We’re now about halfway through the adoption process.
It was our faith in Heavenly Father that shaped our decision to have kids, knowing that it wasn’t a popular decision. But I know that we’re here for a reason, for a purpose. To me, having a perfect body is not the most important thing. Even though my body is not perfect, there’s a lot that I can add to the world around me. I felt that our kids would be able to do the same, even if they inherited Marfan syndrome. Our younger son, Julian, has been diagnosed with Marfan. Our older son, Miles, does not have Marfan but has been diagnosed with autism. Autism wasn’t really on our radar, but the same thing applies.
Your sons both have special needs. How do your memories of being a child with Marfan influence your own parenting?
My brother and sister also have different special needs, and so my parents were thrown into this, having three kids with different disabilities. It wasn’t something that they were prepared for, so they had to learn on their feet. There were things I think that they did very well. My mother encouraged me to get involved in the Marfan community. I remember being a teenager and having a news station coming over to interview me for a segment, and my dad made a big effort to take some of my photography and blow it up and frame it to show them that I was more than just my diagnosis. They encouraged me to be involved and to have other interests and to not see myself as being sick. But they were also very over-protective. So I’m hoping that my understanding of Marfan and having the perspective of the good and the less good from my growing up will help me adjust my parenting. My son is only 2 next month. We’ve got a lot of years to worry about still.
With my older son, there’s a lot about autism that I had to learn. But in dealing with the school system or trying to make sure that he maintains a positive self esteem, or in the way we talk about autism, I try to mirror my experience with Marfan syndrome. I want him to be able to find adult autistic role models. He’s four, so we have conversations like, “Yeah, you have autism. These are some of the good things about autism.” I want him to be proud of who he is.
I take pictures of Julian’s distinctive Marfan features. People might look at them and say I’m taking photos of his imperfections, but to me it’s so important to capture those. I want him to see them as being an important and a beautiful and a valuable part of who he is.
How have ward members supported and helped your family?
When I was in Young Women’s, I had a couple of leaders that really had an impact on me. They were great listeners. They really worked to make sure that we had youth activities that I was able to do. They’ve continued to ask about the work that I do and show interest.
In terms of the boys, people have been supportive in helping out with childcare and trying to get to know them and the things that they like and the needs that they have. My son will be in Sunbeams in January and I had a great conversation with the Primary president about what his needs are and how we can adjust things in Primary to make it easier for him to make that adjustment.
If we’re willing to be open with our struggles, people want to know and help and learn. That’s one of the great things about the Church; it is a larger family unit. I was in the hospital a couple of weeks ago for three days and immediately our ward family was there. They took care of child care for my kids, they came to the hospital to give me a blessing, they brought over meals. Now they may not understand the ins and outs of Marfan syndrome and why I was in the hospital, but they were there to support our family.
In a blogpost you wrote, “Words matter.” Can you explain what you meant by that?
The way we talk about other people and the way we talk about ourselves frames a lot. I read an article where the author talked about people “suffering” from Marfan syndrome. The word “suffering” paints a picture of what you think of the other person and how you think of them handling their issues. We need to be careful of the labels we use because it affects how people see themselves or how they interact with you or other people. We want to use uplifting language. I try to not assume anything negative, so I don’t use “suffering” when I’m talking about another’s illness unless the person tells me they’re suffering. I don’t use the word “victim.”
Is there anything else you’d like to add?
I feel like my knowledge of the gospel, the testimony I’ve built, has been really central to being successful in having Marfan syndrome, and being able to go out and do things and live a full life and be a parent. Our responsibility in our trials, is to try to make them something positive for ourselves or the people around us.
I would never presume to tell anybody else what their Marfan syndrome means for them. I would not do it for my son. I would not do it for my friends. But for me personally, I believe that I was meant to have Marfan syndrome and to do something with it. And so having the knowledge of the plan of salvation has been important to me. I know that Heavenly Father knows me. He knows what I’m going through and He has a plan for me. Knowing that Marfan syndrome is part of that plan is very comforting to me.
Christ didn’t just die for our sins. He also felt all of the pains we have ever felt. All the times I’ve had surgeries or I’ve had pain, or I’ve lost a friend to the syndrome, I know that Christ felt those feelings, and I can go to Him for comfort.
At A Glance
Marital status: Married
Children: Miles (3 1/2) and Julian (2)
Occupation: Stay-at-home mother, freelance writer
Schools Attended: Case Western Reserve University, The Ohio State University
Languages Spoken at Home: English
Favorite Hymn: “Come Thou Fount of Every Blessing” and “Come, Come Ye Saints”
On The Web: http://marfmom.com
Interview by Annette Pimentel. Photos used with permission.