Inspired by someone on one of the fb groups asking this question earlier this evening. What you will get her is MY take on it, as a Marfan patient, a Marfan parent and a Marfan child all at once. Hopefully these perspectives will allow you to see how this is viewed, from a male perspective at least. But please remember that these are MY feelings and opinions on this subject and others may tell you different.
From the perspective of being a Marfan parent I have to say that the biggest thing I have in life is not worrying about how my daughter will see me, will she hate me? The answer to this is the same for any parent whether Marfans is involved or not, one day Yes, the next No. It’s what kids are about. The issue you have to deal with is the worst of all, GUILT. How will you feel about giving a child, YOUR child, the genetic condition you have got when you know how badly it can affect people. Can you live with that guilt? Me personally, in all honesty, some days I think the answer is No. When I am feeling especially down, having a bad day or I hear that my daughter is having a bad day I have been known to cry. There is no easy way to say it, it IS MY FAULT. Now I have her though I would not swap her for anything (sorry Dannii if this embarrasses you). I know however how it will affect her in later life, because it has already done it to me, to my Mum, my sister, my Uncle and My Maternal Grandfather. It is an almighty burden to carry and how I will cope with this should she go down the same path as me I do not yet know. She is only 17 (almost 18) and it will be years yet before (and IF) she develops the problems that I have today. It could be that she will be fine, she could be the same or, she could be worse. That is the problem with Marfan, it varies so much from person to person BUT familial similarities mean that it is more likely that she will be like the rest of us. Thankfully she is armed with the knowledge that she MUST adapt her life to manage the condition as best as is possible where me and my generation were not so lucky and did the harm before we knew what it would mean to us in later life. I will always carry that guilt, no matter what others say, no matter how things turn out. It IS my fault. I cope, but only just. Will you?
From the perspective of being a Marfan child. Do I hate my family, especially my Marfan Mother for me being like this? Some days, yes. I am being honest here so that you get the real picture as to do anything else would be pointless and I don’t do the lying thing. I spent a good few years hating not only my Mother but my God with such a passion that I was ashamed of myself, something that only compounded the problem really. The worst 5 years, helped by other circumstances too I might add, had me being very nasty towards her. This was not me at all, but I can’t make excuses because I did do it and I poured my venom out at her one day and am surprised that it did not destroy her completely because I was pure evil at that time. Even knowing from my own situation as a parent that she would be carrying her share of guilt already I still laid into her verbally and actually got a kick out of hurting her, and other family members too. At this time I was definitely not someone you would have considered to be a friend via facebook or any other way either. I hated everyone for how I was, blamed everyone and sought revenge on them too where possible. Thankfully this eased off when I refound my faith in God and realised that yes, I have got Marfan, but it is Marfan that has made me the person I am today and I know that from my own life experiences I can perhaps help others come to terms with what is after all a really life changing condition. I hope that by sharing my experiences and thoughts that you are getting something from this, my legacy if you will to future generations of Marfs. Now my relationship with my blood relatives have been restored to a better place than they have been in over two decades and we are now more able to talk about our Marfan issues than we where before. I guess that the chaos and heartache highlighted to us all just how it was affecting us, not just me personally but each of us, including those in the family who don’t have it too, although where exactly they are at with their Marfan journey I can’t begin to imagine and until just now I had not given it much thought. I know they have to be relieved but do they carry guilt for NOT having it? I shall have to ask that question next time I see my cousin, the only non-marf in my generation of the family. It will be interesting to hear her thoughts on it and perhaps I can add those thoughts to this post at some point in the future.
These are some very negative perspectives I know but there IS a positive twist to it too. As any of you with Marfan will testify, when you have grown up with this condition and have survived all the rubbish that it throws at you during that life you become a very positive person, at least outwardly, you laugh, you smile, you makes friends with relative ease. Your also smarter than the average member of the race, your bodies physical weakness has caused you to be mentally stronger (and emotionally too I think). Your children may suffer as they grow up, they may be limited in adult life or at worst be disabled by the condition BUT they will be among some of the most loving and genuine people on this Earth because they value every minute and know how it feels to be different and downtrodden. They WILL be the carers and lovers of the next generation, Marfan will make them so. They may even be among the leaders of future generations because of their empathy for others too. Abraham Lincoln is believed to have been a Marfan, and many other influential people too, yours could be among these greats one day.
One thing I know that is important for any Marfan woman to consider is the risk to their lives to go through pregnancy. The strain that being pregnant places on the heart is often too much for a Marfan heart to cope with BUT, and this is key, if you are under a good doctor they will be with you every step of the way should you decide to go for it all the same. I know that those that do are rewarded with a beautiful, if slightly abnormal (but not always I hasten to add) baby. That baby will change your life regardless the problems that you or it have. That is guaranteed. You might not even pass on the defect, its supposed to be 50/50, but in a strong gene pool it could be more, in a weak pool less. My family it’s about 75-80% I reckon looking at rate of us being affected by it. Only you, with advice from your GP/Cardiologist can make the decision and only you will know in the months and years ahead if it was the right call. But know this. IF you do have a Marfan baby that we, your fellow Marfan patients are like a family here on facebook. There is NO question you can ask that someone on these pages can answer for you. We are all here for you. REMEMBER THIS. You are NOT ALONE. God bless you in your decision-making.
ADDITION TO INITIAL POSTING: I told you that my knowledge was limited 😛 Regarding the female position on having babies with Marfan syndrome in the mix, my male opinion and understanding was wrong, and I thank my Marfan female friends for the correction. Apparently the risks are much varied dependent on the specific situation of each Marfan patient. My own sister is, when all said and done a parent of three fine daughters (all Marfan of course) but she survived it with only concern from her family. I guess I should have talked to others first. Anyway, I am a man and as such am allowed to make mistakes so women can correct them 😛 Its my job. I am after all an old school Gentleman 🙂 Please ladies don’t hit me when we gather in Hull it was a JOKE! lol