e/beta thal mom- new member

Hello, my name is Alysa and my husband and I recently found out that our 4 month old daughter has e/beta thal.  We are devastated and shocked by this news.  My husband is from Thailand and carriers the E Hemoglobin and I am from Chicago, IL and have the Thalessemia trait.  I feel so bad that we gave our daughter this and that her life has to be less than perfect.  We don't know a lot about this disease and are overwhelmed by all the information and stories out there- including on here!  We really want to focus on doing everything possible to help her and hope to find out more information from this site and get emotional support.  Other parents: How did you feel when you first found out?  How did you deal with it? 
Our little girl (Paelyn) will start eating soon and we want to give her the best food.  Can anyone suggest a diet for people with thalessimia?
Thanks in advance-

Hello Alyssa,

Welcome to thalpal. First of all - This is not the end of the world. Please don't feel bad. Similar to how a parent passes on the color of hair, eye and skin the trait that you and your husband carried is passed over to the child. There are a lot of things we don't control and this is one of it.

The information about thalassemia (when not heard about) can be overwhelming and scary but there are hundreds of people who have more severe condition than you can think of. Your child's condition might NOT be as severe as you might be thinking. Her condition can be transfusion independent depending on her Hemoglobin level and growth. With proper management she can live a close to normal life. Please enjoy your daughter and don't let these thoughts deter you from enjoying parenthood.

Hi Alysa,

Do you have any test results? These can give some indication of how severe or moderate the outcome will be. A DNA test to reveal the specific beta mutation can also be very helpful. As Narendra has stated, many HbE beta thals do not transfuse, as their phenotype is milder.

Hi Alysa,

I think u have done very good job joining here.and u are serious mom.
just don't worry and do ur duty and enjoy ur child as parents.

i was also very shocked 2 month before when our only son (Aayan-13m) diagnosed with e/beta thal.But i know simply that life ssould not be stopped.
and we have to go a long journey.just one thing i realise we have to give a better life to our son.it is now our part of life.

plse share her blood report here.Many senior member may help u with there experience.

bye...

Thanks for your kind words.  I will call the hospital and ask them to fax me her blood results- as I don't remember exactly what they said they were.

ALueondee,

Congratulations on your new beautiful daughter Paelyn's arrival. We went through the same emotions you are going thru now. Believe me, everything will be OK. This forum is very supportive so i am glad you found it and joined it. We did that and found great solace and found our our confidance back to be a good parent. Slowly go thru informations posted here and ask questions and you will find that Thalassemia is just a part of life and nothing more. 

On your question of what to feed your child when she starts eating , the answer is everything in moderation. and believe me that applies to everyone not just Thals. when the time comes, she will be on iron chelation meds, so do not restrict any food unless she is allergic to it. Try to focus on healthy foods - veggies and fruits. If you want to know more, PM me and I will have my wife reply back as she is the one who made all the solid foods at home for our daughter.

Andy,

Here are the results of Paelyn's blood work.  I don't really know what any of it means but I would love to know your thoughts/reactions.

White Blood Cells:   8.53
Red Blood Cell Count:  4.41
Hemoblobin:  9.3
Hematocrit:  28.6
MCV:  64.8
MCH:  21.1
MCHC:  32.6
RBC Dist Width:  23.4
Platelets:  852
Mean Platelet Volume:  6.9
Monocytes:  3.6
Lymphocytes:  66.1
Neutrophils:  24.0
Eosinophils:  5.7
Basophils:  0.6
Neutrophils Absolute:  2.047
Lymphocytes Absolute:  5.638
Monocytes Absolute:  0.307
Eosinophils Absolute:  0.486
Basophils Absolute:  0.051
Reticulocytes:  2.1
Hemoglobin F:  76.6 (H)
Hemoblobin Other:  23.4

We are doing a little better emotionally- trying to stay as positive as we can and focus on what we can control- her diet and giving her as much love as possible!
Thanks for your support.

Yes, the results do confirm HbE beta thal, but as we have mentioned, the outcome is very difficult to predict. Many patients never need transfusion, while others are transfusion dependent. In recent years it has become apparent that many HbE beta thals adjust to the lower hemoglobin levels and are actually able to remain transfusion free. The normal procedure at this point is to have a complete DNA analysis done to see exactly which beta mutation is involved and also to look for other genetic factors that may moderate the anemia, such as carrying an alpha deletion or the XMN1 polymorphism. The testing can be very helpful in predicting the eventual course.

In today's world, a diagnosis of anemia requiring transfusion is much different than it was 30 years ago. With transfusion and chelation, along with managed care, patients are able to lead fairly normal lives and this will only change for the better as your child grows. I truly believe that within the next 20-25 years, that transfusion will be rendered obsolete by new therapies that eliminate the need for transfusion.

As i told earlier my 14 m son aayan also diagnosed with similar case.
but his hbg was only 6.8 and enlarged spleen.

he was transfused two times within 30 days.and now he is very well and healthy.
we plan for his 3rd transfusion on 15 nov as his hbg level is now 10.03 after 21 days.
so i will ask my dr about hydroxyurea and wheatgrass juice as it may help in case of hbE beta thal case.

in your case u did not tranfused ur doughter yet.just wait and see what will happen and dr suggest.if transfusion required
then discussed with ur dr about hydroxyurea and wheatgrass juice.it will help me also.

take care.

Thanks for the replies.  It has been a difficult few weeks since we found out, mostly our lives have gone back to normal.  We are scheduled to go back to the hospital in January, and will continue to go there every 3 months to monitor her.  I have been writing down everything I have been reading about and will talk to my doctor about it all.  I have started my daughter on a multivitamin (without iron) and am learning what are the best things to feed her.  I have to be careful not to read too much, because it really does scare me.  Right now I can be hopeful that she might have a mild case of thalessemia- I have to hold on to that hope as long as I can!  This sight really has given me hope that she can live a pretty normal life, and I hope that I will be a much better mother having had to gone through this.