Hello Everyone,
I am a carrier of DMD and am deperately trying to find a way to conceive and have a baby that does not have Duchenne's. My husband and I have a beautiful daughter and want her to have a healthy sibling. We have lost three babys to DMD already and I lost my brother in April 2007 to DMD. Has anyone tried IVF? Would you share your story with me? We are looking into Microsort and artificial insemination because of the cost of IVF. Has anyone fought the insurance about covering IVF and won? Our doctor said it should be covered because we have genetic infertility (we are unable to conceive a healthy baby). I would appreciate any comments or advice.

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Hi -

I will give you my story, may or may not help you. I am not a carrier. I was tested when my son got his diagnosis (4 years ago) at age 5. We were trying to have a another child at that time. We then saw a fertility dr. about options to have a child without DMD. I had a 20% chance of having another boy with it. We did do the pre-implantation IVF method, but it did not work for us. They test the embryos before implantation. Yes, it was expensive. We then chose egg donor. This was the best option for our family. My age was a factor too.... I was 41. We now have our boy/girl twins who will be 2 in 3 weeks. Regarding the insurance, our fertility doctor did write a letter to our insurance, but it was denied. That was 3 years ago with United. Not sure if it would work today.

Good luck!!

Kim
Hi,

I too am a DMD carrier. My husband and I have my daughter 3 1/2 who is also a carrier and son Gavin with DMD who is almost 2 1/ 2. We decided we are going to try PGD/IVF, we are currently in the process. I called our insurance company before starting this process. Our insurance does have IVF coverage. I found out that we are also covered for PGD. We had to pay upfront for the PGD because they build a DNA probe to be able to detect the mutation in the embryos. Anyway, you will need to get prior approval before starting from your insurance. We did get our insurance to cover a portion of what we paid. I am also in the process of appealing because for us our doctor is in network. They are only a handful of labratories that can actually build one of these probes. So my doctor who is in network had to have us go to a lab that will do the probe, which of course is out of network. So check and see because I was told that if your doctor is in network and they refer you to a lab that is not then there is a possibility that they will cover it as "in-network". I think your insurance should cover a portion as well. I was told by our insurance that we have a good chance of getting them to pay as "in-network". We are still in the process to see what our insurance does with the IVF part. That will be billed after we are done with the cycle. Although the fertility clinic that we go to had us pay for everything upfront. So I'm not sure if all of them are like that or not. Our insurance did state as part of infertility if a woman is a carrier of an X-linked disease they would in fact be covered. We didn't have any trouble getting pregnant with the two kids we have so they know I'm not infertile, but still I am covered. I'm very sorry to hear about your brother and the loss of your other three. Can't even imagine what you have gone through, it's heartbreaking. I actually had a cousin that died of DMD about 20 years ago. Unfortunately for us none of us knew we were carriers and I was told before getting pregnant the first time with my daughter that without knowing my cousins mutation and not having any blood or tissue to compare that it would be very difficult to tell if I was a carrier. They did find a biopsy, but was so old and done differently that they couldn't even read it. Then I was told that it pops up about a third of the time and there had been no other cases in our family. We found out that my Grandmother, Mother, Aunt my sister, my daugter and my son are all affected, Gavin was the only boy born since my cousin Mark.

I will update you as to what happens with our insurance. It took us a couple of months for them to send us the first check. They do make you jump through a lot of hoops, but it's worth it because it's so darn expensive. I haven't heard of Microsort, can they tell if the baby will have a mutation?
Tonya,
Thank you for sharing your story with me. I hope you work out everything with the insurance. What a hassle. My insurance is different, the IVF would be covered if we had a fertility issue but is not coverered since we do not have a fertility issue. However, the PGD would be covered. Isn't that ridiculous since you can't do the PGD if you don't do IVF first.
Microsort does not tell us if the DMD gene deletion is there or not. It would only increase our chances of having a girl who could be a carrier.
How did you find out your daughter is a carrier? My genetic counselor told me no one would do the test because our daughter is too young and they would only do it if she was of childbearing age and if she herself asked to be tested. I really would like to know if she is a carrier or not. I knew since I was 10 years old and I had a lot of time to think about what I would do about having children. I would like for her to have the same opportunity if she is a carrier.
I hope everything goes well for you with the IVF/PGD. I will keep my fingers crossed for you that it is a successful cycle.
Thank you! You don't know what it means to me to know others are facing the same thing as I am.
Melanie
Melanie,

Darn insurance companies. That's crazy that PGD is covered, but you aren't for IVF unless you have fertility issues. I would fight that, I'm interested too if anyone has done that and the results.

In regards to checking my daughter for carrier status. The genetic counselors told us well there is really no reason to check her now, but if you really want us to we will. I absolutely wanted her checked right away. I think it's important, seems like there are a lot of female carriers that have some troubles with things. I want to make sure if I notice anything that I know if carrier status has anything to do with that. I do know that it is recommended for female carriers to have their heart checked in the late teen years. We also have my daughter taking CoQ10 and Vitamin D3, wanted to start that now.

I agree with you, I wish I would have known my carrier status long before I had kids. I think it can certainly help you make the choices that are right for you as a person. Not to take away from children that have DMD or Carrier status because I wouldn't change a thing because I love my two bundles of joy. However, having the opportunity of knowing before a person has to deal with the heartache is certainly better in my eyes. I would certainly push that issue especially because of how strongly you feel and how you had so much time to think about it, since you knew at 10. I hope they will do the test for you!!

Thank you too, it is nice to have support in this community, so we can all work together, gain strength and help each other.

Tonya :-)
Patty,
Thank you so much for replying. I'm sorry the PGD/IVF was so expensive and didn't work for you. That must be so frustrating. We are going to see a fertility doctor in a few weeks just for a consultation about everything involved in IVF. We did this three years ago and when we saw the cost we gave up. Now three pregnancy loses later we want to look at it again. Of course now I am 35 instead of 32 and the chances of IVF working are even lower. I collected a lot of info then to try and fight the insurance but gave up because several people told me they fought the insurance and lost. I guess we will look into it again. Thanks for the info. I hadn't realized that the wheelchairs were so much. For some reason I forgot all about that.
I hope you and your husband have good luck with your family building.
We are not alone in this. That is good to know. Thanks.
Melanie

Patty Sherman said:
Hi there, I was reading your posts & this is a topic I am so interested in. I am also a carrier and it seems so long ago, but I (& my husband ;-) also tried PGD/IVF - all out of pocket as our insurance covered nothing - we didn't have a "fertility" issue. It didn't work for us - there were some pretty gigantic things wrong with every one of our embryos just in the preliminary PGD stuff, before they even thought about looking at the DMD part. We considered an egg donor as well, but knew there were no guarantees with that either & finally, made the decision to stick with just Brady =).
Anyhow, now that we've seen some of the medical costs of caring for a child with DMD, I don't understand how the insurance companies won't cover a round of IVF/PGD for known carriers. It seems so ridiculous to me. The cost of one round, even two, of PGD/IVF comes no where near the cost to provide medical coverage for a child with DMD. The cost of a power chair alone is greater than the cost of IVF!! Not to mention the cost of all the specialists a child with DMD needs to see during his lifetime. Maybe you could use that as a bargaining chip when dealing with your insurance.

I wish you the best of luck with whatever you decide to do.
Patty

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