19 weeks pregnant and found out today that baby has beta thalassemia major

Hello,

I am 28 yrs old and 19 weeks pregnant with my first child.  My husband and i were both aware that we had thalassemia minor  5 years ago.  We knew that we were going to deal with test results at some point but the actual shock of finding out is something i really never prepared myself for.

It took us a few years of doctors telling us we could not even get pregnant naturally due to other complications before we finally had the shock of our lives in January.  It was a blessing for it to happen for us and we embraced it...even though we knew what was to come. 

I found out the baby has major this morning.  All i have done is cry. I have all these thoughts  are running through my mind.  I need to speak to someone who has gone through this.  My husband and my family have been really supportive but we are all trying to figure out what kind of life our child is going to live.  We are trying to figure out how to deal with this reality.  We are trying to figure out if it is selfish to put our child through so much...

Has anyone else found out they have a child with thalassemia major during an amnio? How can i deal with this?   Please help us. 

Charishma

Hi Charishma,

You have found what is probably the best site on the internet regarding thalassemia. The message you will find here is a fairly positive one and you will learn that the outlook for thalassemia patients has changed drastically in recent years. Thalassemia was formerly classified as a fatal blood disorder. In the US today, thalassemia is now listed as a chronic manageable condition. For starters I will request you read some posts on this site, so you can get a better understanding of the current outlook and treatment for thalassemics is today. I would also ask that you take a look in the gallery and under member photos, take a look especially at the pictures of little A playing hockey. As a ten year old, he is the star player of his hockey team. There are also two thal major women that are members of this group, one in her late 30's and the other 40, who will soon be giving birth. For the 40 year old, it will be her second child. I know they will both tell you that they are very happy their parents decided to give birth to them. In this group we try to stay very current on what is happening in new developments for treating thal and in some ways, we are the leaders in showing parents and patients how to deal with thalassemia.

Please read the posts at http://www.thalassemiapatientsandfriends.com/index.php?topic=2751.msg26480#msg26480  and
http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.msg13006#msg13006

If you do random searches on the net, you will often come across outdated and inaccurate information about thalassemia and this will scare you. Yes, there are many problems that thal patients confront and treatment is a constant, but a patient in today's world can expect a long fruitful life as long as there is full compliance with treatment. With the introduction of oral iron chelators, treatment has become much easier to comply with, and much less intrusive. There are many reasons to be hopeful, as new developments in the approach to treatment are coming fast and some are in trials at this moment. We have many members with young children and they are finding that dealing with thal in their children is not the nightmare they thought it might be and they could not love their kids more than they do. I don't know anyone who has said they wished they hadn't had their children. You should also be aware that the US has some of the best thalassemia centers on earth and excellent treatment programs are available.

Your decisions are for you and your husband to make and all should respect your decisions. Whatever happens, you will have our support.

I expect some of the parents in our group will have more to add.

Dear Charishma,

The information that you have received this morning must be overwhelming for you right now.  After reading your post, I looked at my 10 year old son (lil A) and this is what I saw as I tucked him in to his bed.  A very healthy looking little boy, who did not want to go to bed yet because he was having too much fun - and he does not want the day to end.  His best friend spent the day with us and they played in the park, laughed and teased my daughter and her friend all weekend.  Lil A loves his life very much - he has such a thirst for knowledge, and a gleam of curiosity in his eye - he lives and savors every moment of every day.  My prayers are that he is always happy and healthy.   He plays ice hockey, basketball, soccer, he was chosen as academic student of the year in his entire school last year - and most importantly he love to laugh and tell jokes.  Lil A is very much like most other thal major children that I know - they are very healthy and normal - if their disease is well managed.  Other children on this website - lil Z, Ahmad, and others - are also very bright, intelligent and wonderful.

I also have adult friends who have thal major, one a 41 year old woman who is a mother of 3, and another 27 year old man who is the father of a beautiful little girl.  They are both educated and have great careers. 

Regardless of what decision you make, we are here to support you.  If you do decide to continue with your pregnancy please don't feel selfish, because children with thalassemia can live very normal and healthy lives.  I will say that having a child with thalassemia is a great responsibility.  Here are a few things that will keep your child healthy:

1) Be sure to be seen at a comprehensive thalassemia center

2) have genotype and phenotype testing done before your child is transfused.

3) Be sure that your child's hemoglobin is kept above 95

4) Be sure to begin chelating your child early so that iron does not accumulate in the organs

5) Have your child eat a very balanced diet and supplement with vitamins that we can tell you about on this site

6) Ensure that your child gets regular exercise

7) Help develop your child's self esteem and understanding of thalassemia - so that he/she can take care of him/herself. 

There is every chance that your child can live a full , healthy and happy life. 

Regardless of what decision you make about your pregnancy, we understand that this is a very difficult decision.  Being 19 weeks, I know that you have very little time to firm up your decision.  We support you in whatever you decide and we will be here for you.  I hope that this information is helpful to you.

God Bless,
Sharmin

Hello Charishma,

Welcome on the forum,first of all,rest be assured that whatever deceision you and your family takes,we'll always be here to support you.

I have an eight years old daughter,Little Z,the one Sharmin referred to,you can see her pictures in the gallery,when she was diagnosed,which was when she was three years old,i remember i kept thinking how selfish i am,despite being anemic whole my life why didn't i investigate further what was wrong with me,neither my husband nor me knew we were thal minors until our daughter was diagnosed.But now when i look at her,i don't see anything abnormal about her,she is an intelligent and bright child,she won first position in her annual sports day at her school twice in a row.

As Andy said,treatment for thalassemia has drastically change since last few years,its not a fatal blood disorder anymore,especially for those who live in countries where medical facilities are widely and easily available.

If your child comes in this world,what you can do is just be there for him/her,and be there with a positive perspective of life,with today's treatment a thal major can live a fulfilled and happy life,at least i am looking forward with a positive approach for my daughter,i hope that one day she'll have a successful career,will marry and have kids,and i live in a country where medical facilities are not that easy and cheap.

One of our thal majors member who is in her 30s,Cherianne,has a quote written as her signature,and i love it "Thalassemia is not a burden,its a lifestyle ."

Again whatever decision you'll take we'll respect it,please keep us updated.

Zaini.

Hello Charishma and welcome to the site,

I know how you feel right now cause every parent in this group had this moment before. I just want you to know that having a thal major child is a big responsibility and a challenging thing, but with love, care and good treatment you don't have any reason for not having a normal life. It is difficult but managable. In order to decide, you have to learn and know much about thalassemia cause knowledge is power as we always say. Read as much as you can and you will find in this site all the infomation you will need about the management, the challenges and the life style.

I believe that your baby will be very normal and able to do anything that other children can do.  Regular transfusions, chelation and growth monitering will keep your child healthy and normal like any children of his age.  In fact, many parents say that by time they forget that their child has thalassemia other than when the have to go to the hospital for transfusions.  

Thalassemia will not prevent you from enjoying anything that any other parent can enjoy with their children.  Thalassemia children can do anything.. walk, talk, play, get educated, go to college, get married, have children and live a normal life span. They even become grand parents but again this is all because of tremondous care.

I know that this will not ease your pain and anxiety, but by time I hope that it helps. If you decide to continue with your pregnancy one important thing to know it to ''normalize'' your attitude towards your child inspite of this disorder because our children are the mirror of our thoughts and beliefs. Your child will amaze you when you have faith in him/her. If you believe and work that he/she will live a healthy and normal life,  this will happen. It is so hard and challenging but it can be done

Wishing you all the best - and we are all here to guide you in  raising a healthy thalassemia child together.  Please keep updating and be sure that we are here for you in whatever decesion you take

manal

Hello Charisma!
 
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.

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.

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

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  .

Take care,

Zaini.

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

I just came back from a consult with a hematologist at Winnie Palmer.  The facility has only 2 other Thal Major patients but they were very kind to me and they seem to know what they are doing.  They are also going to put me in touch with one of the other patients mothers. One of the doctors of the facility said he trained at the Philadelphia center Andy was talking about. 

We are still in shock about all of this but we decided before going that regardless of what happens we are definitely keeping our baby and will face the challenges to come.   

All of you have really put things in perspective for us.  This site and your individual messages have really overwhelmed my husband and I and we are truly blessed to have so much support from people who do not even know who we are.  If it wasn't for all of your positivity, I would go crazy.  Honestly, just your quick responses to my messages have kept my spirits up.  I am really thankful for all of you and i look forward to getting to know each of you more.   

Please continue to give us any advice or information you have that you think will be beneficial for us to know.  Please continue to guide me through this so that I can stay positive and give my child everything that it needs.         

Charishma
 

Dear Charishma,

I wish you and your baby all the best.  God bless you and your family with happiness and good health.  With proper treatment, your baby will be very healthy and successful in life.  Treatment for thalassemia is getting better each day, and most of the complications that you will hear about occurred a long time ago when treatment was not as advanced - or due to negligence.  Most problems can be prevented, and things should go smoothly for you and your baby.  We will be here to guide you and help you in any way that we can.  Please feel free to contact any of us when ever you need advice or support. 

Please be sure to take good care of yourself now, for the baby and for yourself.  Eat well, rest and relax as much as you can so that when the baby is born he/she will be healthy and strong.  Also, when the baby is born you will need to be healthy and strong so that you can take care of your baby.  Remember, the more relaxed and matter of fact you are about the thalassemia, the better your child will deal with it. 

Best of luck and god bless,

Sharmin

Dear Charishma,
I am sure you will never regret your decision. My son, Hassan was diagnosed as a thal major at the age of one. Today he is almost three, no different from any non thal child of his age. Transfusion days are still a little difficult on us as his veins are so difficult to find and Hassan could win a WWE title on those days. Infact the last time I was in the hosp the nurse in charge requested me to remove his shoes. She said he had kicked her on her face once and she didn`t know where he would target that day. So many children are born each year with special needs, autism, cerebral palsy, downs syndrome etc.. etc.. I am glad my child has only thalassemia which can be easily managed with a few pricks. This is your first pregnancy, enjoy it to the fullest. We are here to support you and your right decision.
take care
maha

Dear Charishma,
I was in a similar situation like yours about six months back, when I reliazed after my son's birth about his condition, I did not do the amnio test like you did. It is very hard to believe the truth, even today I cannot believe sometimes, but once I read the topics here in the site (which I do everyday) and got to know people like Andy, Sharmin, Zaini ,Narendra etc, I felt much better, they have been great source of strength to me, personally, reading thier topics gives me the energy and strength to fight.....today my son is a beautiful toddler, almost 7 months old, looks and behaves as a seven month toddler, very naughty and keeps us busy....we all adore him.
Though I am scared at times but I always believe and pray that he will be fine with the new treatments and lead a normal life like other children.
It is very hard to believe, at the begining but slowly you will be normal and come to terms with it. The question I used to ask and still do it, "why me and my baby, God?" But my mom keeps telling me you are not the only one, which is so true, so we need to support each other (as everybody does here in this site....wonderful people here),,,I wish you all the best. Please take care of your health and the baby...Get good rest and eat well... let us know if I can help you in any way. We are lucky to be here in US, as the doctors are so good and caring. I wish you a healthy pregnancy and a beautiful baby.

Dear MomofABabyThalMajor

why me and my baby, God?"

I had the same question three years ago when my son was diagnoised and used to ask it every moment of my life until one day one of the memebers here just answered it and told me '' And Why Not You'' .....

To tell you the truth, i had no answer but from that day, i really stopped asking this question because by time i got to know that God does not give us except what we can endure and deal with, it could be hard at the beginning but at the end we will do it. This does not mean that we don't get our weak moments --even after many years of diagnosis-- but you will soon overcome them with hope and the unconditional support you will find here. Have faith that a cure will be there one day and even if it is not there, we have all means today to offer our children a wonderful and normal life. These are gifted children, all they need is more extra care and by time things will be as normal as anything in our lives.

Please do share your thoughts and concerns, wishing you and your baby all the best

manal