I don't but I think you have a valid argument that not having another child with mito...saves them a lot of money.


I haven't posted here before, so I hope my question is appropriate. I have a daughter with mito and am desparate for another baby. After much discussion, my husband and I have decided to expand our family using IVF with egg donation because we don't want to risk having another child with mito. I live in Massachusetts and insurance will pay for infertile couples to do IVF. But i am not infertile - just at a high risk for having another child with this serious disease. Anyone know of the chances that we might get covered even though we are not infertile?
Last edited by sclaffey; September 8th, 2009 at 10:42 PM.
Sharon
mom to:
Eve (born 7/05) - mitochondrial encephalomyopathy (type I and III defect), g-tube
www.eveofdiscovery.blogspot.com



I don't but I think you have a valid argument that not having another child with mito...saves them a lot of money.
Sarah Mom to
:tinkerbell2:Corianne, (former 33 weeker) 7 year old. Reflux & Envr. Allergies (trees, weeds, grass). Dx w/ Asthma. Takes Zantac, Nascort, zyrtec, Albuterol & Flovent.
:turtle:Wesley, former 35 weeker 3 year old. MSPI:Allergic Colitis: Nutramagin for 10 looooong months, Plagiocephally: Cute stinky helmet. Reflux, Bronchoscopy finding Strep pneumo & psudamonas, NEHI (Neuroendocrine Cell Hyperplasia of Infancy) a rare interstitial lung disease confirmed DX w/ Open Lung Biopsy. DGE (anyone else tired of puke???) ASD & PH resolved. Tubes 11/07. Prevacid, Reglan, Flovent, Albuterol if needed, Oxygen dependent 2L, & Peptamen Jr., Boost Breeze to help weight, but oxygen has helped the most.
:lovekisses:Melissa, My dry eating, garlic bread loving 12 month old. Reflux treated with Prevacid. Our Blog: http://coriwes.wordpress.com/
To see whether people are human or not, sometimes I offer them chocolate. If they eat the wrapper, NOT human.
I Live in RI, I know they were adamant about having to try conceiving before they would even consider us infertile. I completely understand your reasoning and while it is an excellent argument, I believe you would have difficult getting covered. The treatments are $$$$. I hope you have success though.
Maureen, mommy to
AJ
born 7-16-07
adoption was final on May 29, 2009!!! Intussusception x2 at 6 and 11 months. Bi-lateral ear tubes, talking up a storm since
Jillian Grace
born 8-20-08
reflux, "unusual MRI", funky metabolic labs, hypotonia, feeding issues since birth, undiagnosed
receives OT (for feeding therapy), PT, nutrition and nursing through Early Intervention
takes: Zantac and Lactulose
Bi-lateral ear tubes on 7/21/09


I don't know much about mito, is it a testable genenetic disorder? The reason I ask is my sil did preimplantation testing on her embryos. Her family has a rare kidney disorder that they didn't want their new child to have. I am not sure on the insurance part. Best to you.



I am in MA and did IVF for 3 of my 4. Have you guys picked a place to go yet?
I am not sure about insurance covering if you do not have a documented infertility problem - I do know that our insurance never questioned the 11 cycles that we did.
Barbara
Mom to Henry (7), Lilly (5 1/2), Jack (4), and Claire (4)


As far as I know, mito is not testable. The issue we are having is that it is possibly inherited from me (through mitochondia). They don't know for sure and don't want to take chances by suggesting we do sperm donation. The genetic counselor said they could test each egg, but that testing would leave that egg non-viable. So they are recommending IVF with egg donation. I am thinking of compiling all of the EOB's from insurance for Eve and telling them they can either pay for the IVF or pay the extensive medical bills for a sick child. I don't know.
Barbara,
I am thinking of going to see Dr. Grow at Baystate Reproductive Medicine. THoughts?
Sharon
mom to:
Eve (born 7/05) - mitochondrial encephalomyopathy (type I and III defect), g-tube
www.eveofdiscovery.blogspot.com



I would think too that since your not infertile your would probably have a better chance at IVF "taking" so to speak KWIM. That would be cheaper too vs someone actually infertile.
Sarah Mom to
:tinkerbell2:Corianne, (former 33 weeker) 7 year old. Reflux & Envr. Allergies (trees, weeds, grass). Dx w/ Asthma. Takes Zantac, Nascort, zyrtec, Albuterol & Flovent.
:turtle:Wesley, former 35 weeker 3 year old. MSPI:Allergic Colitis: Nutramagin for 10 looooong months, Plagiocephally: Cute stinky helmet. Reflux, Bronchoscopy finding Strep pneumo & psudamonas, NEHI (Neuroendocrine Cell Hyperplasia of Infancy) a rare interstitial lung disease confirmed DX w/ Open Lung Biopsy. DGE (anyone else tired of puke???) ASD & PH resolved. Tubes 11/07. Prevacid, Reglan, Flovent, Albuterol if needed, Oxygen dependent 2L, & Peptamen Jr., Boost Breeze to help weight, but oxygen has helped the most.
:lovekisses:Melissa, My dry eating, garlic bread loving 12 month old. Reflux treated with Prevacid. Our Blog: http://coriwes.wordpress.com/
To see whether people are human or not, sometimes I offer them chocolate. If they eat the wrapper, NOT human.


Good Question.
I am not sure this will help.
We have son's special need condition and we want another child. Due to concern of my mom got monopose earlier and my age is 36 yr, our family doctor referred to fertility clinic. Now, to refer for tht only its very big deal here. boz of there is referreal from doctor most of the treatment covered from goverment and for IVF and other stuff... fertility doctor get coverage from our insurance with proper reasoning.
But its little different here, we are planning to have our own kids with starting from IUI. Now I don't know how doctor will put reasonsing for that as well.. bcoz i was preg. before normally...and we have been not trying since long time..just 2-3 month and doct..give me 1 oral medication..and all test..everything is very normal...so if we give more time then we can have..but doctor just told us..if you want faster we can start IUI or IVF and covered from insurance...
with special kid we dont have normal routine also, so we explain them..it can be long time ..but is it enough reasoning..? I am not sure..but doctor said it is enough to covered.
I hope this will help you....good doctor with proper documentaiton can help...Also, if you can find easily donor..can help also to save $$$


Great point!
Originally Posted by cori n wes mom [Dear Guest/Member you can't see link before replyclick here to register]
Sharon
mom to:
Eve (born 7/05) - mitochondrial encephalomyopathy (type I and III defect), g-tube
www.eveofdiscovery.blogspot.com
Actually, a large percentage of women who are treated for "infertility" (I was one of them) have no known cause. It really depends on what issue is being treated as to whether or not the IVF/IUI will be successful on the first cycle or not. I have two friends one of whom had no known cause and the other has PCOS and all three of us got pregnant via IVF on the first cycle. What I will say about IVF is that it is a lot to go through if you truly can get pregnant on your own. Hormone shots before, during and after the cycle, anesthesia for the procedure, lots of time, etc. Big disappointment if it doesn't work out. Finally, I'm not trying to "knock" IVF because I conceived my daughter that way after trying for two years unsuccessfully, but I do feel that whenever we force a "natural" process to become Unnatural (ie. fertilization) outside the body I do wonder of the ramifications. My daughter has lots of issues (questioning mito even) and this thought bothers me all the time. JMO though. We went to the Reproductive Science Center in Lexington, MA.
Maureen, mommy to
AJ
born 7-16-07
adoption was final on May 29, 2009!!! Intussusception x2 at 6 and 11 months. Bi-lateral ear tubes, talking up a storm since
Jillian Grace
born 8-20-08
reflux, "unusual MRI", funky metabolic labs, hypotonia, feeding issues since birth, undiagnosed
receives OT (for feeding therapy), PT, nutrition and nursing through Early Intervention
takes: Zantac and Lactulose
Bi-lateral ear tubes on 7/21/09



We went to RSC in lexington as well, and I was very happy with them. I don't know that your chances increase since you do not have a fertility problem - they might. We were given a less than 1% chance of concieving DD. We were given the same odds with the twins, even though we had had one successful pg. already.
I don't know how much your husband wants a biological connection, but we looked into embryo adoption through Cornell when we first started. When all was said and done, it was less that half of what an IVF procedure would have cost, since you did not have all the medications, u/s, b/w, and retrieval costs.
I know that RSC has a social worker that we were required to meet with. I am sure that othre clinics do as well - they may be able to answer your question. Would you do a know donnor or not? A known donor would most likely not cost as much, since you would not have all of the donor fees.
Barbara
Mom to Henry (7), Lilly (5 1/2), Jack (4), and Claire (4)


[quote=momofour;208362]I don't know how much your husband wants a biological connection, but we looked into embryo adoption through Cornell when we first started. When all was said and done, it was less that half of what an IVF procedure would have cost, since you did not have all the medications, u/s, b/w, and retrieval costs.
quote]
So interesting!! I didn't know you could do embryo donation. I'll have to talk to my husband about that.
Sharon
mom to:
Eve (born 7/05) - mitochondrial encephalomyopathy (type I and III defect), g-tube
www.eveofdiscovery.blogspot.com



I would think that you have a very valid argument for it being covered. I would think that your RE would back you on this and be able to submit it to insurance to see if they actually will cover it.
I did IVF with donor eggs to have my kids (who would have thought that at 35 my eggs were cracked, fried and scrambled, and our orginal diagnosis was very low sperm count.... nope my eggs were the issue, but DH's sperm with some good eggs and they produced some of the best embryos that the lab had ever seen)... if you have any questions on that aspect I would be very happy to help you out.
Molly - Mom to my twin miraclesSarah-Lynn and Andrew, born 8-15-03 @29w, spent 78 days in the NICUIssues: (at birth) hydrohephrosis of left kidney, eating issues, reflux (all resolved).Issues now: speech delay, chronic constipation
Issues: (at birth)very slow to feed in the NICU, feeding issues (resolved)now:,reflux, sinus issues due to reflux, chronic constipation, ADHDmeds: miralax, prevacid, singulair, straterraSurgeries: andenoids removal 4-05, dental surgery 11-06, tonsil and adenoid removal 3-08,nasal pharyngeal stenosis surgery 11-08
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