Discussion Forums > Thalassemia Major
19 weeks pregnant and found out today that baby has beta thalassemia major
Pareeshay:
Hello Charisma!
:welcome2
be assured that at thalpal u are in very good hands.
We are here to support u.
my best wishes and prayers for u and ur family.
Take care.
Pareeshay.
Cari:
i thank you ALL for taking the time to reply to me. You have NO idea how emotional it was for me when I saw so many replies to my post. I could not sleep last night and this morning i can't stop crying. You are all so strong and I want to be this way. All of your stories are giving me so much hope but i am still so scared and shocked. I keep thinking how can this be happening and how am i going to get through this.
Andy, i have read all the information you have provided - thank you so much. I just got a call from my obgyn who has no idea what it is i'm going through. what killed me is that he asked if it meant the baby will not survive. I told him i wanted to talk to a hematologist and so one has called me from Winnie Palmer here in Orlando Florida. I have an appointment today at 3:30pm. Doctors name is dr. Jiusti.
What kinds of questions should i be asking? I'm so scared i can't think right now. Do you know of any centers or doctors in Orlando that i can contact? Even if not that are there any doctors that specialize in this and will talk to to me over the phone.
I am really scared and very depressed. I don't want to hurt my baby but i cannot stop thinking about all of this. The main thing is that i can't stop thinking of the worst. I have a million what if's in my mind even after seeing all of these photos of your children. How can i convince myself that my child will be as healthy as this.
Andy Battaglia:
Please contact Eileen Scott for information on thal friendly hematologists in the Orlando area. I do believe that this may actually be at Winnie Palmer. (The people at Arnold Palmer's were kind enough to help keep my son alive when he was 3 years old and suffered a severe asthma attack while we were vacationing in Melbourne. I think quite highly of them). You should register with Eileen anyway, so please contact her ASAP.
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
Zaini:
Hi Charishma,
Believe me most of us can understand what you are going through,i know its very hard time,this decision is not easy to take,its good that you are contacting a hemotologist,he will be able to give you more technical details,but please remember one more thing that since you and your partner you both are thal minors,in every pregnancy there will be a 25% chance that baby may have thal major,unless you go for IVF which takes time and is not cheap at all.
Try to read as much posts on the forum as you can,try to understand thalassemia,and after that whatever decision you'll take we'll always support you and we'll be happy to have you with us no matter what happens,no one will judge you :hugfriend .
Take care,
Zaini.
Andy Battaglia:
Hi Charishma,
Please type thal minor pregnancy into our search engine and read the relevant posts. You should be taking from 2-5 mg folic acid daily during the pregnancy. Your hemoglobin level should be watched closely, as some thal minors will need a transfusion or two during the pregnancy. Your doctors should also be aware that some thal minors experience clotting issues during pregnancy so this should be watched for. Often, one baby aspirin a day is recommend to help avoid this. I would also recommend that you take a good multivitamin. Do not take iron unless it has been shown that you are deficient through iron studies.
I would also suggest you contact Children's Hospital of Philadelphia for a consultation at the Comprehensive thalassemia center there. Early treatment is key with thalassemia and the earlier your child is in a comprehensive program, the better it will be. This is probably the closest to you of the Comprehensive centers and Dr Cohen is highly recommended. An annual visit to a Comprehensive thal center is a definite must. The difference it will make is huge.
Children’s Hospital of Philadelphia
Appointments, consultations and referrals Contact: Marie Martin, 215-590-2197
Philadelphia, Pennsylvania
Director: Alan Cohen, MD
http://www.chop.edu/consumer/jsp/division/meet_the_team.jsp?sid=26685
Physician Referral Service 1-800-TRY CHOP (1-800-879-2467
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