Musings of a Marfan Mom

Why I’m Having a Baby

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Why did you want to have a baby so much?
Why put yourself through that kind of risk?
Why are you risking the health of your baby?

These are questions I’ve been asked, between this pregnancy and my last. On one hand, these are valid questions, questions that I anticipated getting and tried to prepare for. On the other hand, they’re frustrating because MOST women are not asked to justify their pregnancies, so why should I have to (which will be a post for a later date)?

Nonetheless, I decided that these are questions worth answering, at least for the sake of being totally open. I hope my thought process (and I say mine because I do not want to speak for my husband, who may have arrived at the same conclusions through a different route) will help others struggling with the same decision and at least promote tolerance for people who make the choice that Mark and I have made.

Note: This is me talking about MY experience. I am in NO WAY judging anyone else who could not or decided not to have children. MY decision is just that – mine – and it may not be right for someone else.

I could just say, in response, “we had a baby because we wanted to,” but that’s so incomplete. On one hand, some women just have an urge to procreate. Yes, many men want kids, but I think this NEED to have a baby is unique to women, in a way that I can’t explain. Not all women feel this need, and that’s just fine, but I did. I desperately wanted the opportunity to experience pregnancy, if I knew that it would be reasonable for me to do so. Is that selfish? I wondered that sometimes. But I also think that motherhood, however you come by it, is one of the most selflLESS things a woman can do, so maybe wanting to be pregnant isn’t so bad.
Mark and I are both very research-focused people. I spent a couple of years doing my homework before we decided to try to get pregnant the first time, and then I did more before trying for this baby. If I REALLY thought there was a serious risk to my health, I wouldn’t be pregnant. I know the statistics are on my side (the chances for complications are VERY small), and if something does go wrong, it was meant to be. I could have a spontaneous, massive aortic dissection from being pregnant and die, it’s true. And today, on the way home from an appointment, the car next to me had its tires spontaneously catch fire. The driver began to spin out of control, crossed into our lane, and hit the wall before bouncing off it and stopping not far in front of me. So, he could have hit and killed me today.

If we live our lives in fear of the far-out what-ifs, we miss out on a lot.

I remember a passionate Internet debate about having children knowing there was a 50% chance they’d inherit Marfan. Words like selfish and sin were tossed around. The conversations stuck with me for a long time. How could my future spouse and I choosing to have a baby be a sin?

I don’t talk about my religion a lot, but I think it’s impossible to explain the rest of thought process without mentioning a few of my beliefs. I believe that no matter how “good” we are, we’re going to have challenges. I believe our purpose here is to learn and grow and experience things and make decisions and eventually return to God and say this is what I did with the time you gave me. I believe if we ask, God will help us make our important decisions. And I know that ultimately, things work out.
So when I considered having a child with Marfan syndrome, I thought a lot about my beliefs. And here’s the thing. I can’t control a lot of factors. Even if I used pre-implantation genetic diagnosis to ensure I didn’t have a baby with Marfan, who knows if I’d have a healthy baby? My mom struck out 3 for 3 on having totally healthy kids (all different illnesses, by the way). My husband was diagnosed with two chronic illnesses as an adult. One of my friends adopted a child who, it turned out, had Marfan. Life has no guarantees.

Here’s what I can control. I can try to be an awesome mom. I can provide a safe, happy environment for my children. I know a LOT about Marfan syndrome. If this child has Marfan, I can provide him/her access to the best doctors, the latest research, and a community so close-knit I call them my family. I can love this baby for who they are: a gift that we have been entrusted with.

Are my decisions perfect? I don’t know. But whenever I doubt, I remember what Mark told me when I was pregnant with Menininho: there are no perfect parents, just perfect love.

It’s hard to argue with love.

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37 Comments

  1. I’m linking to this from my blog today. You echo my thought process (as someone with a different connective tissue disorder with a 50% inheritance rate who had three biological children). I know the opinions and judgments of others are hard to handle and appreciate your willingness to speak out.

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  2. Thanks for sharing Maya. Having children was definitely something I struggled with, but I wouldn’t change my decision for anything. I am so blessed to have two wonderful children. I do agree that it is a very individual decision.

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  3. I am glad you wrote this blog! I’ve had people ask me the same thing. I’ve known I had Marfans since I was very young and all my life nobody talking to me about having Marfans and being pregnant. Then BAM when I turned 18 my doctor asked me WHEN I was getting a hysterectomy because having a baby would be too dangerous. Forget that! I know my own body and I know I can handle it! I’ve survived three surguries all between the ages of 12 to 14 so I think I can survive pregnancy. I am now 22 weeks! And doing better than ever. People still wonder why I decided to get pregnant and you took the words right out of my mouth. Thank you!

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  4. This is indeed a deeply personal decision, and all I can say is: If YOUR parents had had to make a choice to have a baby, knowing that YOU might have a 50-50 chance of having Marfan, is there ANYONE READING THIS that would want them to have chosen NOT to bring Maya into this world?

    I do not have Marfan syndrome, so my opinion in this area is biased in the direction of not truly understanding what it means to live with the disorder. However, through my nearly 10 years of working in the Marfan community, I have seen countless examples of people who choose live well despite the challenges.

    You are the model of the informed patient. You research your options, you consider how they fit into the blueprint for your life, and you make the choice that is right for you and your health and your family.

    I, for one, think your children (affected or not) are lucky to have you and Mark as parents, and the odds are stacked in their favor that they will live happy and successful lives, despite Marfan syndrome.

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  5. Well said, Maya! We are raising Haley to be an informed Marfan patient who doesn’t focus just on the limitations of the disorder – but the possibilities it brings as well. I am going to save this blog to share with Haley when she reaches this point in her life. Thanks so much for sharing your story. Your children are very lucky to have you and Mark as parents!

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  6. What an amazing post Maya! Thinking badly of you for choosing to have children never even crossed my mind. I’m appalled and disgusted that people would throw words like selfish or sinful around in regards to someone with Marfan making the decision to have children. Children are a blessing and you have every right to be the mother that you long to be without being judged harshly for it. And you’re absolutely right, life has no guarantees. We could easily get killed driving down the road, but that should never stop us from living. God will provide all that you need and in a matter of months we’ll celebrate sling with you as you welcome your sweet little baby into the world. Love is perfect, indeed.

    Kristi, Live and Love…Out Loud
    @TweetingMama

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  7. Great post sweetie!! Your thoughts make perfect sense, and I love how you talk about how you can’t control it, but you can be the best mom you can and provide the best life for them you can.

    Congrats again on the pregnancy, and this is truly really exciting!

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  8. Absolutely Maya. This is your life. You, Mark, Menininho and baby on board. Everything you said is so very true.

    It is a very personal decision and one that should be respected. Your babies are very lucky to have you 2 as parents. You are a wonderful person and I wish you the very best of everything.

    Hugs,

    Jennifer

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  9. Very nice, Maya. Although you don’t really owe anyone an explanation, yours shows that you have given this a lot of thought. I dare anyone to argue with that.

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  10. So well said Maya. Despite the fact he is only 17 (and male) people have already questioned Lee as to whether he would have children. People are nothing if not interesting.
    And I would have to agree with Jonathan in saying that the world would be missing out on a lot if Maya were not in it!!!
    Hugs

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  11. You have NO idea how perfectly timed your post is. I have major baby-itis right now……I want Baby #2. Hubby is not so sure – and Marfan Syndrome comes up all the time….do we roll that dice again? I say yes. He feels guilt. Its a tough road to walk on.

    I am so excited for you! Congrats.

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  12. I got asked the same types of questions when i was pregnant with my two children./ No i don’t have Marfans ( that im aware of) but i do have quite a few heart and nerve disorders. Of course there was the thought “what if the baby got any of the diseases i have?…. ect’ but just like you said ” what if i died bc of a crazy driver…ect” things happen and you can’t control everything. All you can do is make what you can out of the life you are given. Forget people that try to belittle your decisions. they themselves are probably struggling with their own issues at the moment; hence their deflection. ( sorry for the rant )

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  13. i think people will always have an opinion about how you can lead your life better. it sounds like you’ve definitely done the research, and are willing to do the work to make your life fulfilling, no matter what the challenges. that’s a commendable thing. thanks for stopping by my blog!

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  14. Thanks for sharing. I know that people mean well when they ask questions like you mentioned. They are concerned for you. But even regardless of if there is a genetic condition that could be passed on or not, there’s so many things to consider when wanting to have a baby. And arming yourself with knowledge is the best thing for the baby.

    BTW, your questions reminded me of how many times people would comment on my son’s height. It seems always ok to comment how tall someone has gotten but not for how short someone is. And the feeling of frustation is the same you feel to those questions. People just don’t realize the impact of it.

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  15. Hubby and I have some friends who chose not to have children because they were worried about passing “something” down to their children. I suppose there is strength in that choice, but I just can’t live my life and my child’s life in the fear of maybe passing “something” down to her. As you said, I could also be hit by a car tomorrow. Everything is a risk. It’s the way it goes.

    Great post! Congratulations on your pregnancy! I’m so excited for you guys!

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  16. Beautiful post, Maya. Made me tear up.

    Your children are so fortunate to have you as a mother!

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  17. Thanks for sharing, Maya! Silly you have to justify your decision to others, but I bet your thoughts help people with similar choices to make.

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  18. Well, I guess I am behind on my reading! Thanks for all you shared, and you’ve got my FULL support. My husband’s family (five biological children) discovered when one of them died in her sleep at age 30 that the family has Long QT syndrome, a cardiac arrhythmia. Once the family figured that out, people got medication and pacemaker/defibrillators, etc.. But if we could time travel back to Ann’s conception (my sister in law who died) would we pluck her out of the embryo “pool” because she had the gene for long qt? Heck no! Anyway, a long way of saying we’re right her with you!

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  19. This is a beautiful post Maya. It made me think about that baby that was aborted in Italy and found two days later still alive. He had a cleft palate and that’s why he was aborted. My husband and I were talking about it, and I’m sure if he had lived and you’d asked him in 20 years time ‘would you rather have lived’ he would have said yes. Every life is precious, and if you have the desire and the ability and you’re taking calculated risks, then I say go for it. What is meant to be will be. I’m so looking forward to hearing how it all goes for you. *hugs*

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  20. This is beautiful post that illustrates well why you became a mom.

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  21. This is my first visit to your blog, via the Blog Hop. Glad to find you! I think this is a beautiful post…and I like that you talked about your faith in it. God never makes mistakes.

    I think the only people who should ever have to justify why they are having more babies are the people who obviously have no desire to take care of those children. You certainly do, and I think most women can totally relate to your “need” to have babies. I certainly can! Congratulations on your second pregnancy, and I pray God’s blessings on your growing family!

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  22. That’s a beautiful post. I love the way you “explain” yourself – without anger, defensiveness or anything. You have a deep understanding and belief that is refreshing to experience/hear. It’s similar – on a very small level – with my having three more children at age 35 and older. I was labeled high risk, of course, and a lot of people question whether a woman should risk that. So, in a way, I understand. I respect your decision especially since you researched and thought about it. I’m sure it isn’t something you thought of lightly even with the first pregnancy. Thanks for sharing this and thanks for educating me about something I knew nothing about.

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  23. I was glad to read this today. I just found out my niece has marfans a couple of hours ago, she is just fourteen. I myself suffer from infertility of unknown origin and I have been so sad thinking of a life for her unable to have a baby too. I feel so blessed to have her in my life, I would not in a million years choose for her to not be here so why should she not have a baby, even with the risk? If the child is half as amazing as my niece the world will be a better place regardless.

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  24. that is a bad disease to the body .

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    marfmom Reply:

    Yes, Marfan can be hard on the body. There are many diseases and disorders that are more hard too.

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  25. thank you so much for this post Maya! I am in tears right now because it feels like you havr written what I have felt but could never put into words. I’ve read a lot of your blog and never questioned why you had kids, but it was so nice to hear it explained. From someone who has Marfans and has a baby, I have heard all these questions before. I felt the same exact way you did. That urge, almost need to be pregnant and have my own baby. Also the thought processes about the risks mirror my own. However, when someone would ask these questions I would become very anxious and upset because of how strongly I felt. I was never able to answer them well enough or put into words how I felt. I am very excited to share this with my family and friends and show them what went through my mind with such an important and emotional decision. Thanks again Maya!

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  26. Thank you, so much, for leading me here and sharing your story with me! It means so much!

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  27. Pingback: Musings of a Marfan Mom - The SITS Girls

  28. Having a baby (or not) is a very personal decision and I’ve never understood why other people feel they have the right to weigh in on your process. Sounds like you’ve made a great family!

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  29. I can’t imagine the difficulty to trying to decide what the right thing to do was. In some ways, our medical knowledge brings new challenges to decision making. It is very brave of you to share your journey, knowing some will disagree. Sending you and your beautiful family much love today!!

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  30. A very thoughtful and thought-provoking post. Thank you for sharing.

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  31. Hi, visiting you via the SITS girls. Very courageous of you! I love to see women who are outspoken ambassadors for others who have the same problems and might not have a voice of their own. Wish you the best with your blog!

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  32. Thank you for sharing. You don’t need to justify having a baby… I have five children -people are always asking, “are you going to have more?”…I am like…why is it your business? Regardless -thank you for sharing, it is a beautiful post… you are right – you can’t argue with love.

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    marfmom Reply:

    So true! People act like they have a right to know every little detail about people’s lives these days!

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  33. I have Marfan Syrdome too. If I had known that Marfan Syndrome was prevalent in my family I would not have had children.I also have auto immune duseases. I had two daughters and one with Marfan’s and both with autoimmune diseases. Now my grandchildren are turning up with Marfans. My grown children have had quite a challenge with their health.
    I knew the odds of passing along my genetic junk. So instead of using my head I used my heart to make a decision to have children. What I did was make it possible for these conditions to keep traveling on in our family tree.
    I say to people now, go to a geneticist and see what the off springs chances are to have the conditions. 50/50 Chance with Marfans. That’s too high to take a chance.
    Watching your children and grandchildren struggle because I didn’t use your head will tear your heart out later in life.

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    marfmom Reply:

    I’m really sorry that you seem to have regrets. That must be hard. I can say that “your head will tear your heart out later in life” isn’t necessarily true for everyone. So far we’re 5 years out from when I wrote this, and I have zero regrets. My affected son has had some health problems more severe than I have, and others less so. He is one of the 3 lights of my life. I can’t imagine life without him, and despite having Marfan he is an active and happy child. Having kids at all (with Marfan or not) takes a lot of sacrifice, so if you look at it only logically, there’s not a lot of reason to have children, period. But love isn’t logical. If I could have more biological children I would, but I can’t even regret too much that I can’t, because if I could I wouldn’t have my daughter, whom we adopted last year. I’d imagine some things will be harder for my children because they have me for a mother. But I also believe that they’ll learn some really valuable things too, like independence and compassion. As I hope you can see from the post, having children wasn’t a decision that my husband and I took lightly, and I can’t foresee anything changing about how we feel down the road.

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  34. Thank you for this post. I knew of my diagnosis of Marfan before having kids and also of the chance of passing it on to my children. I had a doctor question me about if it’s something I really want to risk passing on and that question just stung so bad. I mean, I was a person living with Marfan and this doctor questioned whether I wanted to risk creating a person with Marfan, for risk of poor quality of life. I have always felt “different”, and hated some physical qualities that I have, but I’ve never thought of myself as having a poor quality of life. The question made me wonder, if my parents had known before having me and my brothers, would they have “risked it”, or decided to adopt instead, therefore me never being created.
    I agree with your view that you never know what life will throw at you, and I think knowing about having Marfan is actual a benefit, I know what I’m dealing with here. I have 2 kids (4 and 6 years old), both with Marfan, and both having different qualities of the syndrome. It pains me to say that with each new discovery of an affliction caused by Marfan (when we recently discovered my daughters scoliosis and when my son needed glasses due to slightly loosened tendons holding his lense in place), I have been brought back to that question from the doctor and felt guilty and selfish for them having to deal with this. But things could certainly be worse. I have 2 smart, happy, wonderful kids who I couldn’t imagine living without. Sometimes I think, maybe I was meant to have them and for them to have Marfan so we can all be in this together, and not feel so alone.
    Thanks again for your post.

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