Matching invitro baby

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Offline ama

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Matching invitro baby
« on: May 21, 2013, 09:14:43 AM »
My son who is 21/2 year old has thalassemia major.  He gets transfusions very few weeks.  He is our only child.  My husband and I want to get bone marrow transplant on him but only from a matching sibling.  Does anyone know any good places in us where we can this procedure done and having matching baby and is thalassemia free.  Thank you.

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Offline Andy Battaglia

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Re: Matching invitro baby
« Reply #1 on: May 21, 2013, 02:48:14 PM »
Where do you live?
Andy

All we are saying is give thals a chance.

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Offline ama

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Re: Matching invitro baby
« Reply #2 on: May 21, 2013, 05:17:24 PM »
We live in Arizona. However, we are open to the location. Thanks Andy.

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Offline Andy Battaglia

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Re: Matching invitro baby
« Reply #3 on: May 21, 2013, 06:03:12 PM »
LA Children's is one of the top thal centers in the country and also has one of the most experienced BMT staffs.
http://www.chla.org/site/c.ipINKTOAJsG/b.3764343/k.CDEE/Bone_Marrow_Transplant__BMT__Research_Immunology.htm#.UZu2mrW1Gk4
Andy

All we are saying is give thals a chance.

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Offline ama

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Re: Matching invitro baby
« Reply #4 on: May 21, 2013, 09:36:49 PM »
Which place is the best to get invitro done from... I just want to be very sure the baby doesn't have thalassemia major and is exact match to my son

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Offline Andy Battaglia

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Re: Matching invitro baby
« Reply #5 on: May 21, 2013, 11:14:37 PM »
I suggest that you contact Eileen at CAF and see if she can give some guidance as to where in Arizona you can get IVF/PGD done. You might want to ask if she concurs with LA Children's in regards to having the transplant. That may be the closest hospital to you that has much experience with BMT's for thalassemia.  

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org
Andy

All we are saying is give thals a chance.

Re: Matching invitro baby
« Reply #6 on: May 22, 2013, 01:01:56 PM »
Hi AMA
I'm in almost the same situation. My son 8 mnths has been having transfusions since the past 5 mnths. He is my 3rd baby, but unfortunately my other 2 kids don't match.
I'm also checking into having another thru in vitro. I have an apt at CHOP in July just before the conference there on thalassemia. Will pass on any info I get.

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Offline ama

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Re: Matching invitro baby
« Reply #7 on: May 22, 2013, 04:24:09 PM »
Thank you Andy & Pooja for all ur help!!

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Offline ama

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Re: Matching invitro baby
« Reply #8 on: May 22, 2013, 04:25:48 PM »
The only information I found that could be useful is...

IVF Team Helps Family Beat Beta Thalassemia


Ileana Martinez knew that if she got pregnant, her child would have only a one in four chance of being healthy and free of beta thalassemia, a life-threatening anemia that her other two children suffer from. But those chances weren’t good enough for Martinez, whose children need monthly blood transfusions to treat the disease.

That’s why she turned to Antonio Gargiulo, MD, and the IVF clinic at BWH for help. “I want my children to be healthy,” said Martinez, who came to Boston from Cuba in 1998 with her husband, son and daughter.

That wish partly came true eight months ago when she delivered Abimael, a healthy baby boy who will be able to help ease his 11-year-old sister’s suffering, thanks to preimplantation genetic diagnosis (PGD) at BWH.

Martinez and her husband are carriers of beta thalassemia, as they each have one affected gene and one normal gene. “Genetically, there is a one in four chance that their child will have the disease,” explained Gargiulo. “There’s one chance in four that a child could be completely healthy, and one chance in two that a child would be a carrier.”

It is not uncommon for PGD to be performed to avoid disease, but it is much more complex to have to look for additional genetic markers.

Through PGD, Gargiulo and his team were able to both genetically analyze embryonic cells to ensure the baby would be free of beta thalassemia and also that the baby was an HLA (human leukocyte antigen) match for one of its siblings. That means the baby can donate bone marrow to his sister, a preferred treatment for beta thalassemia because it offers long-term control of the disease, unlike the monthly blood transfusions she receives.

“Previously, no one in the family was HLA compatible with either of the children, so bone marrow transplant was not an option,” Gargiulo said.

Now it is, thanks to the IVF clinic. This PGD for HLA-matched beta thalassemia screening was the first of its kind at BWH, and the Martinez family is thrilled. Abimael will be able to donate stem cells via bone marrow transplant to his sister next month.

“Abimael’s birth represents an exceptional achievement for our team. It epitomizes the high degree of organizational and technical abilities of our clinical and laboratory personnel who continue to push the envelope to build healthy families in Boston and around the world,” said Gargiulo, adding that Ms. Martinez hopes to undergo IVF again and have another healthy baby who is a match for her son.

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Offline aabha

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Re: Matching invitro baby
« Reply #9 on: May 24, 2013, 07:15:00 AM »
Dear Ama
I have undergone 2 cycles of PGD with IVF at Superior ART clinic Bangkok....the doctor and staff were good and the system transparent.

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Offline ama

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Re: Matching invitro baby
« Reply #10 on: May 24, 2013, 06:01:03 PM »
Aabah are they matching HLA. 

 Are they making sure that the baby s bonemarrow will be exact match for use  for bonemarrow transplantation ?   

How much is the cost of this procedure and how much is the cost overall? 

How much time duration for this process .

Where are you planning to get bonemarrow transplant and why?    What factors made you choose that center?

Thanks aabah for all ur help!:)

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Offline aabha

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Re: Matching invitro baby
« Reply #11 on: June 02, 2013, 10:12:35 AM »
Dear Ama
the cost was around INR 400000,the stay about 1 month.we chose superior ART as this option was not available in India and Bangkok was the most economical :smiley :smiley
Yes,the HLA is totally matched with that of the affected child.
My son underwent unrelated cord blood transplant 2yrs ago,he is thal free since then.
good luck
aabha

 

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