Muenke Syndrome

[Christina's_Mommy]

Well, when Chris and I went back to Dallas for Christina's follow-up, we both had blood drawn for the Muenke. Chris's results are not in as of last night but I did hear about mine.........


I do have the Muenke as well. I didn't appear to have any cranio as a kid though (At least any diagnosed) but I do share some of the same features. It is also believed that I got it from my mother but nothing has been proven yet.

I don't really know where to go from here. I want to have other children but.......
I'm being told that it is best to adopt, and that it would be cruel to put another child through what Christina went through. If I were to adopt though, what do I tell them? Christina would think I adopted because it would be wrong to have other children who may be like her and I don't want her thinking that. I don't want her to think either that being different is wrong because it is not.
I don't know what to do now......
?????????????????

[sarahob]

I don't really know what to say. This is a really tough decision and you'll really have to follow your heart. In terms of genetics, have they given you the probability that another child will also have the syndrome? Is there a genetic counsellor you can talk to? My brother has 7 children. His 6th child has a severe unknown genetic condition (she is 4 and has several disabilities and an unknown prognosis). They have a 1 in 4 chance of having another child with the same condition. They did decide to have another child (he appears to be fine). There is no easy answer. Maybe you can find some other parents who have been in the same scenerio. Thinking about you. This must be really tough on your whole family.

[Christina's_Mommy]

As far as the chance of passing, it's 50/50 if only I have it. If Chris has it too (unlikely) then it would be up to 60-70 chance.

oh.....As far as the comment made to me about it being cruel to pass it on, my MIL said that last night. I feel like she doesn't understand the dilemma.

[beccad]

I don't think it would be cruel to want to have another child with just a chance of it having this. I mean you have it and Christina has it and you have lived you life with it just fine. You are a wife and a mom with this disorder and are raising a child with it. What is cruel about that?
It is definitely a personal decision but I would take that chance.

It reminds me of the little people family on TLC that have 4 kids and 3 are normal size and one of them is a little person size. She was asked by Oprah why they wanted kids knowing that there would be a chance they would have this. And she said why wouldn't I want kids just because they might have this disorder. Motherhood is a beautiful thing regardless of what your children might have. I wouldn't trade them for the world. Please don't take this the wrong way and I hope I don't offend you.

[Jenny]

Thats always been a tough question and a big debate on here. I guess all I can really say is go with your heart. I too have a 50/50 chance of passing the syndrome. I had kids knowing i had this, but I also knew full well of the consequences. I also knew growing up (being a different position that just a mom, but a mom with cranio) that it really wasn't that detrimental. Even almost 30 years ago, they had a "fix" for it. I went on to have more after my first craniobaby, the second is craniofree. The third we are monitoring with ultrasounds, but if it will have cranio, it's ok! I know how to handle it, and we will be just fine. I have a great support system though. Some families do not, and it sounds like your mil doesn't understand. I once had someone tell me not to have kids because of it, and this was coming from somone who continued to have children even though she had a faulty cervix, and had her first at 25 weeks gestation. To me, THAT risk is WAAAY worse than cranio. So, it all depends on your gut feelings, and whether you have the great support like I did. But know that the technology is awesome nowadays! And the child, most likely will never know they had a surgery until you tell them. My daughter doesn't even realize she had surgery and she is 5 now. sooo, just follow your heart.

Oh, and were given these "special" gifts, because were special mommas. I like to think were stronger than others because we've been given this beautiful gift of life, cranio and all.

[cheryl2]

I don't know about Muenke, but I know with Saethre Chotzen, I have a 50/50 chance of passing it to any child I have. There's no way to know though how much the child will be affected by SCS. Our family has mild cases, usually. Clara is the first one in our family to have cranio. I have SCS and do not have cranio. I know it's a difficult decision. I posted somewhere else that DH does not to have another child. There is a small chance with SCS of worse symptoms such as mental retardation. Hubby didn't want to take that risk. I was leaning toward having another, but there are advantages to having an only. Now I'm almost 38, and although there are plenty of moms who have babies in their 40s, I know it's riskier. Talk about it with your DH. Take care.

[Tawnia]

Don't let anyone tell you not to have more children...that is your decision. If you knew about it before would you have still had Christina? There is your answer.

[Amy K]

Follow your heart, Carol. If you want to have more babies, then do. God is in control and He knows exactly what He wants to give you. Christina is beautiful and perfect in His eyes. I like what Tawnia said...

[babylaura]

It can and should be only your and your husband's decision.

The way I see it is, we can quote statistics as to how likely it is a child will have a certain condition till the cows come home. We can very rarely know for sure, but with each child we have we take a risk. Even if the child doesn't have the condition we are concerned for, we can't tell if they will suffer from something else, or die from a childhood illness, or be killed in a car crash. There is no risk-free pregnancy, we can only be the best mums we can.

[Christina's_Mommy]

Thanks ladies.

My MIL is known for starting trouble. My SIL informed me last night that my MIL said that I was having a "pity-party" because I too have the syndrome and I can't think for myself in where to go from here"
I really have never liked my MIL anyway but she of all people should know what this is like considering my hubby had numerious throat surgeries and several trachs. :smackdown I think I will as my MIL about her comment later today when I call. Think I should be a you-know-what when I do???? :angry

Anyway.....Chris and I have a while yet before we have to worry about another baby. (I hope to have Christina out of diapers) One Q though. Can they pull eggs out of me and test them for the Muenke? I was told by one of my friends that since I know about this syndrome, that if we have another child with it, insurance would likely not cover any of the care needed. Is that true???

[Christina's_Mommy]

We got Chris's results back the other day. His were normal. His mother said "At least I don't have to worry about my two girls having anything now." I kinda took that wrong but at least Chris came up clear.

[craniomommynbaby]

I agree with the previous posts that this is a decision with you and your DH. My hubby and I do not want another child partly because of the cranio, but it has nothing to do with valuing Simon's life or another cranio baby's life differently. We just do not have the strength or the resources to handle a second child, much less one who will have expensive medical issues. My parents went on and had 3 children after me, all cranio-free. Now, my siblings do worry that they could have our syndrome and pass it to their kids, but I think that they will be okay. It will not stop them from having children and filling their homes with love, and that is a good thing. My sister had some concerns with her son Ethan and was on here briefly last year. It turns out that he had positional plagio and torticollis and no cranio, but she sure did hear some rude comments from her in-laws about it. They would say things about how people in our family have so much wrong, and they would also tell my sister that she was overreacting. A few of the things that they said or joked about really hurt her, especially since they are a family of beautiful people with seemingly no physical defects. Not too long after she went through this, people in that family started having heart problems and dropping dead. It turns out that their "perfect" genes are not so perfect. I don't think that they will be making more comments any time soon.

[melsch]

One Q though. Can they pull eggs out of me and test them for the Muenke? I was told by one of my friends that since I know about this syndrome, that if we have another child with it, insurance would likely not cover any of the care needed. Is that true???

I heard on the news just the other day that Congress is working on legislation that will prohibit insurance companies, as well as employers, from discriminating against genetic disorders and/or results of such testing. I would check, but I think that it passed the house with flying colors, is soon to go through the Senate, and Bush is said to be ready to sign it!

[lonetcrystal]

Muenke Syndrome, also known as FGFR3-related craniosynostosis, is a human specific condition characterized by the premature closure of certain bones of the skull during development, which affects the shape of the head and face. Many people with this disorder have a premature fusion of skull bones along the coronal suture. Other parts of the skull may be malformed as well. The gene mutation associated with Muenke syndrome do not have any of the characteristic features of the disorder.
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Lonetcrystal

Guaranteed ROI (http://www.drivenwide.com)

[Lija]

All I wud say is,

" Perfection is achieved, not when there is nothing more to add, but when there is nothing left to take away."

Also,

"Courage is not the absence of fear, but rather the judgement that something else is more important than fear."

So listen to your heart & leave else on God. Let him decide....

[AllyCat]

I heard on the news just the other day that Congress is working on legislation that will prohibit insurance companies, as well as employers, from discriminating against genetic disorders and/or results of such testing. I would check, but I think that it passed the house with flying colors, is soon to go through the Senate, and Bush is said to be ready to sign it!

Melissa...any chance you have a link for this? As a political junkie and health care employee and union member, I am always interested in stuff like this.

[jodi36075]

Carol,
Like yourself, I have Muenke as well. I am new to this board. I am thirty eight years old and I have Muenke syndrome. At the age of two weeks, and again at two years, I had surgery for bicorornal synosis. At the time, my parents were told my cranio was non - syndromic. However, when my husband and I went for genetic testing, we found out otherwise. It turns out that I tested positive for muenke syndrome. To make a long story short, by the time we got the results, I was already pregnant with our son Philip. We were told that with each pregnancy there was a fifty percent chance that they baby would have Muenke. Our son Philip was born in February 2005 without Muenke.

As time has gone on, we have explored the possibility of having another child. It has been a very difficult journey. We did speak to a fertility specialist who told us that they can harvest my eggs and have them tested. He did say that each egg had a 50 percent chance of having Muenke. There could be the chance that all of the eggs they harvest have it as well. It is a very difficult decision.

I have gone on to lead a very happy and healthy life. As far as the syndrome symtoms go, I do have the crooked pinkies, short fingers, and wide toes.
Jodi