''a child against all odds''

[mneville]

Melissa-

We took Aidan out to Minnesota in July when he was about 22 months old. We are in NJ so we flew out and met with Warwick for 4 hours. I think it was worth it b/c it put my mind at ease that we spoke with the "best". He is a ton of knowledge. Aidan's CF doctor was not convinced with everything he said so sometimes we are conflicted about treatments. We have Warwick's VEST so I wanted to meet him just to hear about that in more detail.

Warwick wrote about 40 pages of thoughts about Living with CF. Amy has psoted them on here somewhere. That is pretty much what he said while we were out there. He's almost 80 so we wanted to get out there before he retired completely. Good luck, Megan

 

[mneville]

Melissa-

We took Aidan out to Minnesota in July when he was about 22 months old. We are in NJ so we flew out and met with Warwick for 4 hours. I think it was worth it b/c it put my mind at ease that we spoke with the "best". He is a ton of knowledge. Aidan's CF doctor was not convinced with everything he said so sometimes we are conflicted about treatments. We have Warwick's VEST so I wanted to meet him just to hear about that in more detail.

Warwick wrote about 40 pages of thoughts about Living with CF. Amy has psoted them on here somewhere. That is pretty much what he said while we were out there. He's almost 80 so we wanted to get out there before he retired completely. Good luck, Megan

 

[mneville]

Melissa-

We took Aidan out to Minnesota in July when he was about 22 months old. We are in NJ so we flew out and met with Warwick for 4 hours. I think it was worth it b/c it put my mind at ease that we spoke with the "best". He is a ton of knowledge. Aidan's CF doctor was not convinced with everything he said so sometimes we are conflicted about treatments. We have Warwick's VEST so I wanted to meet him just to hear about that in more detail.

Warwick wrote about 40 pages of thoughts about Living with CF. Amy has psoted them on here somewhere. That is pretty much what he said while we were out there. He's almost 80 so we wanted to get out there before he retired completely. Good luck, Megan

 

[eli]

Thanks Megan,

I have sent you a private message with my new email add. I will be waiting to hear from you.
Thankyou.

Christian, i mentioned to Megan that you guy's wanted to also hear her story and if she doesn't mind posting it in thr pregnancy section.
Its now up to her how much she wants to share with everyone.

I will be looking forward to you posting on there, about your experience during the pergnancy.

Stay well!

 

[eli]

Thanks Megan,

I have sent you a private message with my new email add. I will be waiting to hear from you.
Thankyou.

Christian, i mentioned to Megan that you guy's wanted to also hear her story and if she doesn't mind posting it in thr pregnancy section.
Its now up to her how much she wants to share with everyone.

I will be looking forward to you posting on there, about your experience during the pergnancy.

Stay well!

 

[eli]

Thanks Megan,

I have sent you a private message with my new email add. I will be waiting to hear from you.
Thankyou.

Christian, i mentioned to Megan that you guy's wanted to also hear her story and if she doesn't mind posting it in thr pregnancy section.
Its now up to her how much she wants to share with everyone.

I will be looking forward to you posting on there, about your experience during the pergnancy.

Stay well!

 

[mneville]

Eli- I tried your email and wrote my whole story but it came back as undeliverable?

Here's how it works for you and Jennifer.

We worked with a geneticist in Michigan, Dr Mark Hughes, who pioneered PGD and has done the most cases in the world, many of them CF. We had a phone conference with him where he explains Everything in detail. We sent our blood and about $3,000 after we decided to go through with it. Then we worked with an IVF clinic in NJ that works with Hughes' lab.

We went through an IVF cycle to produce mulitple eggs, then fertilized with husband's sperm. On Day 3 of growing in the lab, ONE CELL is taken from each embryo. Those cells are flown out to Michigan and for 19 straight hours, the cells are tested for their CF status. If the test results were conclusive on Day 5, Hughes tells the IVF clinic the results. If there are non CF embryos and they are still growing in the lab (some do not make it) they are transferred back into the mother in hopes of a pregnancy.

We actually went through three cycles of IVF but that's a long story. If you look up IVF procedures on the Net, you will see more in detail what it consists of and why it doesn't always work.

We sent out 5 embryos to Michigan- one was affected with CF (later degenerated in the lab) one was CF carrier, one was nothing, 2 were not able to be tested. We had two embryos transferred and one implanted and created this pregnancy. PGD is not 100% but it was the most we could medically do to avoid CF. In saying that, the baby could be born with any number of other problems, it was only tested for CF. We did not feel at all comforatble just taking the chance, we felt it could possible jeopardize Aidan and would be finacially and emotionally exhausting. Hope this helps. I go to the regular OB on Tuesday, I'll be 10 weeks.Megan

 

[mneville]

Eli- I tried your email and wrote my whole story but it came back as undeliverable?

Here's how it works for you and Jennifer.

We worked with a geneticist in Michigan, Dr Mark Hughes, who pioneered PGD and has done the most cases in the world, many of them CF. We had a phone conference with him where he explains Everything in detail. We sent our blood and about $3,000 after we decided to go through with it. Then we worked with an IVF clinic in NJ that works with Hughes' lab.

We went through an IVF cycle to produce mulitple eggs, then fertilized with husband's sperm. On Day 3 of growing in the lab, ONE CELL is taken from each embryo. Those cells are flown out to Michigan and for 19 straight hours, the cells are tested for their CF status. If the test results were conclusive on Day 5, Hughes tells the IVF clinic the results. If there are non CF embryos and they are still growing in the lab (some do not make it) they are transferred back into the mother in hopes of a pregnancy.

We actually went through three cycles of IVF but that's a long story. If you look up IVF procedures on the Net, you will see more in detail what it consists of and why it doesn't always work.

We sent out 5 embryos to Michigan- one was affected with CF (later degenerated in the lab) one was CF carrier, one was nothing, 2 were not able to be tested. We had two embryos transferred and one implanted and created this pregnancy. PGD is not 100% but it was the most we could medically do to avoid CF. In saying that, the baby could be born with any number of other problems, it was only tested for CF. We did not feel at all comforatble just taking the chance, we felt it could possible jeopardize Aidan and would be finacially and emotionally exhausting. Hope this helps. I go to the regular OB on Tuesday, I'll be 10 weeks.Megan

 

[mneville]

Eli- I tried your email and wrote my whole story but it came back as undeliverable?

Here's how it works for you and Jennifer.

We worked with a geneticist in Michigan, Dr Mark Hughes, who pioneered PGD and has done the most cases in the world, many of them CF. We had a phone conference with him where he explains Everything in detail. We sent our blood and about $3,000 after we decided to go through with it. Then we worked with an IVF clinic in NJ that works with Hughes' lab.

We went through an IVF cycle to produce mulitple eggs, then fertilized with husband's sperm. On Day 3 of growing in the lab, ONE CELL is taken from each embryo. Those cells are flown out to Michigan and for 19 straight hours, the cells are tested for their CF status. If the test results were conclusive on Day 5, Hughes tells the IVF clinic the results. If there are non CF embryos and they are still growing in the lab (some do not make it) they are transferred back into the mother in hopes of a pregnancy.

We actually went through three cycles of IVF but that's a long story. If you look up IVF procedures on the Net, you will see more in detail what it consists of and why it doesn't always work.

We sent out 5 embryos to Michigan- one was affected with CF (later degenerated in the lab) one was CF carrier, one was nothing, 2 were not able to be tested. We had two embryos transferred and one implanted and created this pregnancy. PGD is not 100% but it was the most we could medically do to avoid CF. In saying that, the baby could be born with any number of other problems, it was only tested for CF. We did not feel at all comforatble just taking the chance, we felt it could possible jeopardize Aidan and would be finacially and emotionally exhausting. Hope this helps. I go to the regular OB on Tuesday, I'll be 10 weeks.Megan

 

[dyza]

The first programme came and went without any metion of CF as I understand it, I havent watched it yet.
The next in line is on male infertility, and this is deffinately about sperm retrieval from a man who has CF. I think they will be focusing on the procedure, and I'm assuming that it is the procedure that Marcus went throo.
Its 9p.m. british time

The programme is on the 28th of November

 

[dyza]

The first programme came and went without any metion of CF as I understand it, I havent watched it yet.
The next in line is on male infertility, and this is deffinately about sperm retrieval from a man who has CF. I think they will be focusing on the procedure, and I'm assuming that it is the procedure that Marcus went throo.
Its 9p.m. british time

The programme is on the 28th of November

 

[dyza]

The first programme came and went without any metion of CF as I understand it, I havent watched it yet.
The next in line is on male infertility, and this is deffinately about sperm retrieval from a man who has CF. I think they will be focusing on the procedure, and I'm assuming that it is the procedure that Marcus went throo.
Its 9p.m. british time

The programme is on the 28th of November

 

[dyza]

<a target=_blank class=ftalternatingbarlinklarge href="http://wwitv.com/portal.htm
">http://wwitv.com/portal.htm
</a>
here is a link too a video, tv, website portal for lots of tv from around the world. IN the UK bit, go to BBC1 , its near the top, and this appears to be the BBC 24/7

 

[dyza]

<a target=_blank class=ftalternatingbarlinklarge href="http://wwitv.com/portal.htm
">http://wwitv.com/portal.htm
</a>
here is a link too a video, tv, website portal for lots of tv from around the world. IN the UK bit, go to BBC1 , its near the top, and this appears to be the BBC 24/7

 

[dyza]

<a target=_blank class=ftalternatingbarlinklarge href="http://wwitv.com/portal.htm
">http://wwitv.com/portal.htm
</a>
here is a link too a video, tv, website portal for lots of tv from around the world. IN the UK bit, go to BBC1 , its near the top, and this appears to be the BBC 24/7