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Andi
08-16-2006, 04:37 PM
Hi everyone, I haven't been around much lately -- I hope summer is going beautifully for all of you!

Well, we are finally officially starting on the IVF journey, and I'm not sure this is the best place to post this, but since everything else related to this is in this forum, I'll stick it here. :)

Basically, we had to wait until Dr. Hughes (at Genesis Genetics in Detroit) was able to create a preimplantation diagnostic test (PGD) to identify the syndrome as it appears in my family. So my mom and I, and my DH, had to submit blood samples to him and then his lab got to work. This took a while, I think because of the deletion that causes our Saethre-Chotzen syndrome, so he had to go through three DNA probes to find a reliable pattern in my mom's and my DNA around the deletion area. This was a pretty complex genetic issue to understand for us, so I'll not get into too much detail, but basically this means that this test is very specifically for the way SCS appears in my family, so it's a much more positive identifier of the presence of SCS in a one-cell test than say, a FISH test (which the Children's Hospital of Phila. had proposed initially for us). Anyway, it took them a couple months to develop the test, and we finally learned this past Monday that they are ready! So we are starting the medications and I should be ready for the egg retrieval early next month.

The crazy part is... after my eggs are retrieved and fertilized, they sit in a dish for three days, then one cell is taken out of each embryo. These cells are then couriered immediately to Detroit, and they are analyzed by people who work all night, 19 straight hours, to get the results. The results are called back to my clinic, and then, presuming there's syndrome-free embryos, we decide which ones and how many to put back into me. That transfer should occur about five days after the eggs are retrieved. A couple weeks later I get a blood test to see if I'm pregnant!

We had a chance to talk with Dr. Hughes about all of this, and I asked him if this process had been done before for SCS -- he said in the last year they had helped 13 families with this same syndrome. I was amazed and suprised and glad to hear that, because I had doubted myself whether this was the right thing to do for so long. But it was good to hear that other people had taken this path before us.

I wanted to share how this was going, in case anyone was considering a similar process. It has been a long road getting this far, but I do feel it's worth it. I'm also very excited to get started! I will definitely keep in touch about how it works out.

Jennifer
08-16-2006, 10:09 PM
Oh, please continue to keep in touch....I've been wondering how everything is going....what an amazing process! Wow! I'll be watching for updates! Good luck :hugg

KALEMSMOM
08-16-2006, 10:48 PM
Definetely an amazing process. I find it very interesting to read your posts. Genetics has always intrigued me. Very fascinating. I can't wait to hear your update. I will pray that all goes as planned.

plukids
08-17-2006, 11:18 PM
Hi Andi! Thanks for your update. Best wishes to you on this journey! I'll pray for success for you!! This is an amazing journey you are about to embark. Please keep us posted. I love your avatar, it is such a fun photo. It's always nice to put a face with a post.

Matthews Mommy
09-20-2006, 02:25 PM
Good luck keep us posted.

Andi
09-30-2006, 06:36 PM
Hi everyone,

Well, the short story is that the first cycle did not work out -- it's a long story, but basically my ovaries got overstimulated by the medications and we had to wait several days for my hormone levels to go down before the eggs could be retrieved. Although they got a lot of eggs (16), only 5 fertilized. They were able to biopsy 4, but only one was free of SCS and it did not survive to the day the results came back. It seems that the low fertilization rate and the slow growth rate of the embryos after biopsy may have been due to my eggs being over-mature from waiting around for my hormone levels to go down before retrieval.

We were pretty broken up about it, but the doctors are confident that now that they know my body better they can medicate me more precisely and we'll have much better results in the second cycle. So we're trying again, and it's moving much faster than the first time around. Here's hoping that it'll work this time.

I guess part of my documenting this process to you all is to share what this is like for anyone considering this as an option to prevent passing on cranio. I will say that it has been a pretty emotionally-wrenching process, and I have to take very good care of myself physically and emotionally. I am grateful that I don't work full-time (although my student studies are pretty demanding and should be considered full-time work since I have a full load plus an assistantship). I have the ability to arrange my schedule around this and recognize that it's a really big thing we're doing. All that being said, I still don't regret making the decision to try this, and I know our children will come to us one way or another.

In the meantime, we're trying to convince our insurance company to cover our costs for both the IVF and PGD, so I'm going to post somewhere here with a question or two -- but if anyone reads this soon, and cares to answer, could anyone tell me what the costs were (paid by insurance) for your child's surgeries? And how many surgeries your kid had to have? We've got a good case going, but I want to put some hard numbers to the insurance company to make the financial argument in our favor.

Thanks for the good wishes everyone, and I hope I can bring good news to you all soon.

Andi

Jennifer
09-30-2006, 07:06 PM
Sorry about the first round. Let's hope round 2 goes great!!!! :pray
Costs....Emily's first surgery was about $70,000- they paid all but $5000. Emily's second surgery was $45,000...again all but $3000. Surgeries were about 16 months apart....That's not including all the pre-op/post-op visits, the CT's prior to surgery, etc......

Katie
12-18-2006, 02:13 PM
Hey Andi! I wanted to bump this up to see how you all were progressing :adore