Lost about Baby "I"

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Offline BabyI

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Lost about Baby "I"
« on: October 04, 2012, 12:43:31 AM »
Hello everyone,

My little baby was born recently and I feel like God gave me a perfect gift. She is everything I would have wanted in a baby. My heart melts everytime I look at her. On her 1 month checkup I was informed the new born screening that she has thalassemia. I've never heard of this before. I went to see hematologist and had blood work done on the whole family. I was a confirmed Brta thal trait. I am awaiting my husband's results. So far the hematologist keeps telling me she is only making Fetal hemaglobin and that is why she suspects my baby to have thal major. But is that enough to go on??? I mean isn't it possible she later produces hemaglobin A??? And if she only has fetal hemaglobin would that be bad for her? I've been a nervous wreck trying to sort things out; searching the Internet and looking at studies. Glad I found this forum. I don't think I understand it all and am still waiting results. But why is the hematologist so quick to say she has thal major even before blood tests and only going on the baby screening results? I am praying that she doesn't have thalassemia as it would be so hard to see her suffer. I am praying everyday. Please help me understand this. I appreciate your help.

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Offline Narendra

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Re: Lost about Baby "I"
« Reply #1 on: October 04, 2012, 05:30:32 PM »
Hello,

Welcome to thalpal. First of all, relax and enjoy the baby. Yes, it seems difficult when you first hear about all these never heard before words like Thalassemia but it is not the end of the world.

When a child is born they have fetal Hemoglobin. After 5/6 months, the switch starts occurring to Adult Hemoglobin. It is good to have fetal Hemoglobin but that is not going to be in the child's body forever and there is a need for her own body to create the blood (Adult Hemoglobin).

There are thousands of thal trait (carriers) around the world and thousands of thal Major's. With today's advancement in medical science thalassemia is no more a deadly condition. With proper management, there is a close to normal life. Also, with new cure's coming up - there is a lot of hope for new ways to cure Thalassemia.

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Offline Andy Battaglia

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Re: Lost about Baby "I"
« Reply #2 on: October 04, 2012, 07:30:26 PM »
It is very likely that the baby does have thal major, since there was no HbA reported. Normally, the HbF level will be 80-90% at the absolute highest. As Narendra has explained, thal major can be well managed these days, so it is not the terrible prognosis that it once was. Where are you located? The US has thalassemia Centers of Excellence and it is highly recommended that thals be seen at one of them annually.
Andy

All we are saying is give thals a chance.

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Offline BabyI

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Re: Lost about Baby "I"
« Reply #3 on: October 05, 2012, 02:00:49 AM »
Thanks for the responses. Today the hematologist told me that my husband also is Beta Thal. So it seems it is true, my baby has thalassemia. But I have hope. I am hoping she is not major and rather an intermediate. She said she will do some tests to determine exactly what gene trait we have in Beta thal which will give her an idea if my baby is major or not.
Andy, can you tell me what center I should go to? I live in upstate New York. I want to make sure I do everything possible to help my baby. I've been reading about the drug hydroxeura and am hopeful it will help us. But my doctor said she doesn't recommend it unless baby is 1 (she is almost two months now). She said her hemaglobin is 12 and when it drops to 7 she will transfuse her. What precautions should I take before that? Any tests I should get done? How to make sure blood is good and doesn't have any disease?

I am meeting the doc next week. What should I ask her to get done? Any tests?

She said she will discuss options like bone marrow. Even though my baby has siblings and one may be a match, I can't bring myself to take the risk of losing her or her developing other complications. I feel transfusions or the hydroxurea is better choice.

Knowing this outcome for my child had saddened me very much but I feel Allah (God) gave her to us for a reason. What are the odds that in all my community (far and wide), in all of our extended big families, no one has ever come across this? We are from the Middle East. We are the first and only ones in our community. But instead of crying, I chose to fight this and stay strong for my baby and family. And I am grateful to Allah that I have been given my daughter and that so many advances have been made and are being made in thalassemia.

BabyI's mom

Re: Lost about Baby "I"
« Reply #4 on: October 24, 2012, 03:45:14 AM »
I recently found out that our little baby girl has e/beta thalessemia and we are heartbroken.  I understand what you are going through- so many unanswered questions and I feel like we are just waiting for her to get sick.  I don't want my beautiful girl to go through all this- I wish there was something I could do- but all I can do is cry.

Re: Lost about Baby "I"
« Reply #5 on: November 06, 2012, 02:14:37 AM »
Welcome! I want to share with you that I have two sons, both are almost 6 years old. One son is a biological son who does not have thalassemia. Our second son we chose to adopt from China when he was 3 years old and we knew he had beta thalassemia major. So, now we have two sons almost the same age (2 months apart). We live in the U.S. where we have access to a safe and plentiful blood supply (vs. the blood shortage in China right now) and access to chelation. All the information from doctors and Cooley's Anemia Foundation (in NYC) is that with proper transfusions and chelation, along with annual tests and monitoring, a patient with thalassemia major should live a life (lifespan) very comparable to someone without thalassemia.
For us, having two boys (one with thal and one without), we see no difference right now in their activity levels, quality of life, etc. Our son with thalassemia misses one afternoon of school every 3 weeks to go for a blood transfusion (3 1/2 - 4 hour process for him). The next 21 days he appears (and we treat him) as a typical almost 6 year old child.
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

Re: Lost about Baby "I"
« Reply #6 on: November 06, 2012, 02:19:30 AM »
What precautions should I take before that? Any tests I should get done? How to make sure blood is good and doesn't have any disease?
BabyI's mom

BabyI's Mom,
You can ask your hematologist to find out if you and/or your husband can do direct blood donation for your daughter. They will need to test your blood to see if it is the best match for your child. I know several families in California that do this. Limiting the # of donors for your child will be advised. My son receives blood transfusions from the same few people at this point. The more blood/more donors the child/adult is exposed to the more antibodies they produce, which ultimately will make it more difficult to find a match long term.
The blood in the United States is tested for HIV and Hep. B. We were told it was not to be worried about. If you read the 2012 Standards of Care for Thalassemia (available from Cooley's Anemia Foundation or you can print from Oakland Children's Hospital website), HIV testing is not even mentioned as anything that would be routinely done.
During the transfusion, your baby will be able to eat, drink, sleep, play as would normally do.
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

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Offline BabyI

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Re: Lost about Baby "I"
« Reply #7 on: January 19, 2013, 11:12:24 PM »
I'm really surprised in California they allow parents to donate blood to their child. I went to the excellence center and they told me absolutely we CANNOT donate to our child and its out of the question because her blood cannot have our blood. Any one else hear this? I really want to give my blood but they said no.

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Offline Pratik

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Re: Lost about Baby "I"
« Reply #8 on: January 20, 2013, 06:33:32 AM »
I'm really surprised in California they allow parents to donate blood to their child. I went to the excellence center and they told me absolutely we CANNOT donate to our child and its out of the question because her blood cannot have our blood. Any one else hear this? I really want to give my blood but they said no.
It's fine but generally doctors advise not to until and unless it's not possible.

-P.
Every child is special.

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Offline Himanshu Kumar

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Re: Lost about Baby "I"
« Reply #9 on: January 20, 2013, 11:13:49 AM »
I'm really surprised in California they allow parents to donate blood to their child. I went to the excellence center and they told me absolutely we CANNOT donate to our child and its out of the question because her blood cannot have our blood. Any one else hear this? I really want to give my blood but they said no.

It surprises me too how could doctors allow parents or even relatives to donate blood to their child? Though it doesn't effect the child's health, having parent's blood or any other relative's blood has it's effect on the outcome of BMT if the marrow is taken from a relative. With every transfusion our body develops antibodies in response to antigens that are passed during the transfusion. These antibodies interfere with the marrow engraftment during BMT and could lead to either severe GVHD or rejection of the transplant. Please do not take blood from relatives for transfusion to the extent possible.

I would also suggest use of blood filters for every transfusion if you are planning for BMT at some stage.

Best Wishes.
Himanshu


Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.

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Offline Andy Battaglia

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Re: Lost about Baby "I"
« Reply #10 on: January 20, 2013, 05:04:22 PM »
The Red Cross has an official policy on direct donations.
http://www.redcrossblood.org/donating-blood/types-donations/autologous-and-directed
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A directed donation occurs when a patient's family and friends donate blood for his or her upcoming procedure. A patient must give consent and have his/her physician submit a written request for the Red Cross to collect blood from the selected donors.

Carefully consider the following:

There is no evidence that patients can select safer donors than the volunteer blood system provides.
All donated blood products are tested with the same tests for HIV and other infectious diseases, which further enhances the safety of the blood supply.
Social pressure associated with directed donations may compromise the reliability of the donor’s answers to health-history questions
The Red Cross accepts both directed and regular donations and encourages eligible donors to give blood for patients in need.

One reason a parent of a thal would be disqualified is for low Hb, which is common among minors. However, it isn't considered 100% safe by some, so caution is taken and parents often are not allowed to donate to their own children.
http://www.aboutkidshealth.ca/En/HealthAZ/TestsAndTreatments/Procedures/Pages/Directed-Blood-Donation.aspx
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Is directed blood donation safer than volunteer blood donation?
There is no evidence that directed blood donations are safer than donations from CBS’s volunteer donor program. The volunteer donor program is their regular blood supply. Although all blood is tested, all blood donations have a very small chance that they may pass on an infection when the blood is given to others.
Sometimes, because a child may react to blood from family members, the parents’ blood may be less safe than regular blood for their child.
Because thals need transfusions regularly, this caution becomes more important.
Andy

All we are saying is give thals a chance.

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Offline BabyI

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Re: Lost about Baby "I"
« Reply #11 on: January 24, 2013, 06:33:59 PM »
Thanks Andy appreciate it.

 

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