has anyone had a baby with PDG?

[bighope2009]

Hello everyone, i'm new to this message board

My husband and I have a genetic problem and after having a miscarriage last April, which we haven't come to terms with yet, we've decided to have PGD.

we'll be starting the blood tests next week which are needed for the preparation stage.

i'm very anxious about everything and desperate to hear from you if you have any advice/experiences to share!

BH x

[BMG]

Hi- Yes, I have a two year old healthy son thanks to PGD!

My younger brother passed away at 17 from Duchene Muscular Dystrophy. I knew I was a DMD carrier from a young age and was thrilled to find out about PGD.

The PGD set up was very straight forward for us. My husband and I each provided blood. We also provided genetic analysis that my family had undergone to identify the defect years before. Sorry I can not speak to what is needed for other genetic problems.

The IVF cycle was the hardest part. I got used to the shots in a few days and it wasn't as bad as I expected. But, there are lots of ups and downs emotionally throughout.

Good luck to you!

[bighope2009]

Thanks a lot for this information. Soooooo nice to hear from people who had successful PGD and are blessed with a baby at the end. Makes us feel more positive

May I ask you how many cycles u needed before if was successful and how long it took to start the procedure after getting the DNA analysis ready?

We've been told that the DNA analysis is going to take 3 months and everything seems to take ages! We waited for the NHS funding for 6 months and it's been 2 months since we had it and still things are going so slow!!!! This time delay is very stressful!!!!

Thanks again

Hi- Yes, I have a two year old healthy son thanks to PGD!

My younger brother passed away at 17 from Duchene Muscular Dystrophy. I knew I was a DMD carrier from a young age and was thrilled to find out about PGD.

The PGD set up was very straight forward for us. My husband and I each provided blood. We also provided genetic analysis that my family had undergone to identify the defect years before. Sorry I can not speak to what is needed for other genetic problems.

The IVF cycle was the hardest part. I got used to the shots in a few days and it wasn't as bad as I expected. But, there are lots of ups and downs emotionally throughout.

Good luck to you!

[BMG]

It worked the first time!

I am trying for number two now and not responding well to stimulation meds 3 years later. So we may be trying for awhile, but it does help to know it works.

Regarding the set-up I don't recall it taking much more than a few weeks. My brother had a blood sample on file at Johns Hopkins Hospital from our earlier family genetic analysis. So they knew exactly what they were looking for in the set up.

We are in the States and none of this is funded or covered by insurance as it is considered experiential and contraversal to some. We were able to do the set up while I was still in BCP part of cycle. So, the plus side is it moved fast.

As you progress I am happy to chat. Best wishes.

[lilmd]

BMG,

Are you going to Hopkins for IVF?

[BMG]

No. We are working with a clinic in Chicago. RE was on of the firsts to do PGD.

[bighope2009]

BMG,

Sorry to hear that u r not responding well to the stimulation meds but don't give up! Just look at ur son and say "it worked the first time so hopefully it will work this time again!"

U won't believe how much i've read about the whole procedure. I know it's a long journey which can be very disappointing but i still believe it's worth it. Having a healthy baby is sth every couple would dream of.

We r lucky that in the UK u can apply for NHS funding.

We r still at a very early stage; having the blood test done tomorrow, hopefully, if nothing went wrong again. The appointment has been canceled twice!!!!

I think that having a blood sample from ur brother helped things move fast.

Wish u the best of luck with the new cycle.

Hope 2 hear from u again.

BH xx

[AmandaM]

We used PGD for genetic reasons and I am pregnant w twins. Good luck

[bighope2009]

Thanks so much for ur response Amanda. Twins...how exciting Congrats!!! Nice 2 hear that it works...The more i hear from people who had successful PGD, the more positive i feel about it.

My husband and I r both carriers of a genetic trait, which if the baby had both of them, she/he would be having a very serious genetic disease!!

We both provided blood yesterday and we'll have to wait for 3 months for the DNA analysis to be done....too long...can't wait till it's done!

Was it ur first time and how many wks r u now? It would be really nice to hear more about ur experience, if u don't mind of course.

Good luck to u and take care of urself...and the twins of course

Hope 2 hear from u again.

BH x

[bighope2009]

Hi again Amanda...i've just realised from ur signature that u had IVF 3 times so forget about that question

BH x

[AmandaM]

Hi Bighope

I dont mind sharing my experience at all. I am on bedrest right now so it is a little hard to type so forgive any typeos

I have a genetic condition that can be very serious. I am lucky that I dont have many problems from it but any child I have could have severe problems. My DH does not have it so every child would have a 50/50 chance of having it. For that reason we decided to use PGD.

Like you ours started with blood work. First that took my blood to see if they could map the genetic condition which they could. Then using my DNA, the genetic company built a test that would only work on my DNA. That whole process took about 3 months.

After the test was ready I started the IVF process. It took 3 tries for me to get pregnant. The first time they hyper stimulated me and thought that was the cause of the egg quality issues. The second time they reduced the amount of meds they gave me and still had the same egg quality issue. At that point they determined there was a fertility issue as well. We originally thought we were just dealing with the PGD aspect. After that they made some changes and on the third try I got pregnant with the twins.

Whih genetic company are you using if you don't mind my asking.

I am currently 31 weeks today/ A week and a half ago I had severe bleeding and contractions caused by a placenta tear. They were able to stop it but I am on complete bed rest for the rest of the pregnancy, having to stay mostly on my sides and not my back to take pressure off of things. I think that PGD is a great way to have the healthiest child possible.

Since you are doing PGD I am sure you know how the process works, but if you dont I'd be glad to share my knowledge.

Also, where my PGD was done the chance of the child having the trait they are testing for is 1or 2 percent which is fabulous odds. We did not do Amnio due to the increased risk with twins.

Hope this helps

Amanda

[bighope2009]

Hi Amanda,
Thanks a lot for the information. It helped a lot …..Even my husband was interested in reading ur message (by the way, don't laugh at my question....ppl on this message board use the abbreviation DH, does is stand for Dear Husband ?)

Sorry 2 hear that u r on complete bed rest but I think what u’ve gone through is worth it after all. The next few weeks will fly.....you got this far and it won’t be long before u’ll be holding the twins in ur arms . By the way, do u know the gender of ur babies?

Well, as mums, I believe that it’s our responsibility to protect our children so I think we r privileged to live in a time when such a technique is available.

U asked me which genetic company we are using. Well, we r having the treatment in London but they've sent the blood samples to Italy to have the DNA analysis done there. So the whole process of blood work took 3 months in ur case as well….seems it’s almost the same for any genetic analysis!

I have so many questions to ask u so let me start by asking how long u had 2 wait to start a new cycle and how long each IVF cycle takes, i.e., since u start meds till u had the embryos transferred? It would really nice if u can tell me in detail about the whole process because i haven't told anyone at work that i was going 2 have PGD so i want to know how much time i might need off.

Look after yourself Amanda and wish u the best of luck.
Please keep me updated with ur progress.

BH x

[AmandaM]

I'm so glad that my experience has helped you some. Yes DH stands for dearest husband

It will def be worth the bedrest. I'd much rather be in bed then have them be born too early. You will get to hold your babies soon enough too

We are having a boy and a girl. We only wanted two children to begin with so it is truly a blessing to have two at once and one of each

It only took 3 months to set up the test. Once they are testing it for real it happens overnight, at least in my case. We used a company in the US. However, if I remember correctly the guy who started the process began it in London.

We had the first cycle in Aug/Sept 07. Due to the timing of the holidays we had to wait until Jan/Feb 08 for the second cycle. After that I wanted to wait a little while for emotional reasons before we did it again. We did the third cycke in Aug/Sept 08.

The length of the cycle can vary depending on exactly what the process is for you. The first two cycles they had me take 3 weeks of birth control pills. (not on the third cycle) After that I took 2 weeks of Lupron to control my cycle. After that I took Lupron and micro HCG mixed for like a week. Then it is 10-12 days of stimulus meds. After that is the egg retrieval. PGD is done on day 3. And egg transfer is done on day 5. So it takes about 4-7 weeks depending on if you take the BCP.

You will have to go in for some blood work and ultrasounds in the mornings. The closer you get to the retrieval you will have to go in for ultrasounds more often. After the retrieval you will be a little sore. I would take the day afterwards off. After the transfer I was on 2 days of bedrest. This varies by the doctor though.

The PGD IVF is the same as a typical IVF util day 3. On day 3 they make a small slit in each embryo and then pull out one cell. After they are done all the samples are shipped by a carrier to the place where it is tested. On day 4 it is tested and the morning of day 5(the transfer day) they will call the IVF center and tell them which embryos are good. Then the embryologist will look at them under a microscope and determine of the useable ones which are the highest quality. Then you will have a regular transfer. It truly is amazing that with a single cell they can determine all of this.

Take care and keep me posted.

[bighope2009]

Hiiiiii Amanda...
I really can't thank u enough for the information u gave....very clear and detailed....can't be any better if it came from a PGD specialist and thanks for the nice wishes too!!

So u r having a boy and a girl...that's totally awesome! u must be really excited!!! When did u find out? Hope u’ve already done some baby clothes shopping so u don’t have 2 worry about that now.

I think I understand now why they’ve told us that we would need 2 go 2 the hospital every other day for around 2 weeks. Think that would be as we get closer to the egg retrieval. We r planning 2 stay in London during those 2 weeks rather than taking the train there every other day! But they’ve never mentioned the need to take the BCP…could be cos that was 2 early.

Thanks a lot again 4 all ur help which is really what i needed at this stressful time. It really made me more positive about the whole process .

Pls keep me posted and let me know how things r going.

BH x

[AmandaM]

BH

So glad all of that info was helpful. I know all of it is overwhelming.

Yes I did get a chance to go shopping. My parents and my mother in law are taking turns helping out since I can't get up to get my food. They are also helping get things in order.

I had another bleeding incident yesterday morning, this time without contractions. They now think it wasn't the placenta but a leaking vein on my cervix. This is a lot better for the babies then the placenta. But it could keep happening until the birth.

Our clinic was in town and the apptments only take 20-40 mins.

MY RE says that there is no proof that the BCP help the process, it only helps them to control your cycle so they have a little more control over the ovulation timing. Not all doctors use them. Have you started the process yet? They might not have mentioned it because you only take them for 3 weeks before the prcoess. You also have to be off them for a little while before you can start IVF and take them for the 3 weeks.

Amanda