My 2 month old daughter may have to get a transfusion soon .....

Today my 2 month old daughter's condition suddenly deteriorated. She seemed OK last night when she went to sleep (she seemed a bit fussy, but I thought that she was just being a baby). But this morning, she was having trouble waking up and when she did finally wake up (much later than when she usually wakes up), she did not feel like feeding. Once she started, she fell asleep once more during the feed. She also started getting fussy even in the morning (a first for her).

We called up the hematologist and got a full CBC done. We found that her Hb has fallen to 7.9 from 8.9 just 5 days back. Her hematocrit is still at around 22 (down from 25.6 five days back). Is this kind of a drop normal for b-thal major babies? The hematologist has said that he will check her numbers again next Tuesday (Sep 26) and if deemed necessary transfuse her.

I am really scared. I thought that everything will be fine at least for the first 6 months when she has the HbF, but it does not seem to be the case. Is it normal for a baby so young to get a transfusion? If she gets a transfusion next week, how should my wife and I prepare ourselves? I will really appreciate if someone has some advise to share with us ....

Thanks,

Bostonian

Hi,

I have heard of cases where transfusion starts as early as 7 weeks. The doctors may decide to start soon with your daughter if she is showing failure to thrive, amd almost certainly once the Hb drops below 7. One thing that has to be watched for is any sign of infection, fever, etc., as thals that age are very susceptible to infection and antibiotics have to be administered. Breastfeeding does help the child acquire immunities and will offer some protection.

As a parent who twice had to watch his 3 year old son have blood taken from an artery for a carbon dioxide test, a test that is extremely painful and makes grown men scream, I can sympathize with what you will have to do. Sometimes you are screaming inside along with your child but you do your best to not show it.  My advice is to dig deep and find that strength that is there and that you will need to cope with the reality of raising a thal child. Be aware of how much care has changed in recent years and that with the advent of Exjade, your child may never have to know the pain of nightly desferal injections. Have faith that you will be good parents and hope that the future will be brighter. I feel that I have seen through your posts that you have the strength of character and determination to do everything you can for your daughter. I think she is in good hands in the hands of her parents.

Hi Andy,

I really appreciate the kind words of support and advice. I draw my strength from this community. I will keep the forum posted about how my daughter does next week.

Regards,

Bostonian

Hi Bostonian

You dont know how truly sorry I am hearing about your daughter's condition and about your apprehensions and fears.
Well, it reminds me of the days 30 years back.
But now after 30 years, all I can tell you is,  that you are in the best of places, with the best of the doctors  and in a hospital where you will get all the modern facilities.That itself will give you some strength. They are used to handling small babies in terms of finding the vein with one prick etc.

There is nothing that you can do when your baby will be hurting from those needle pricks.. but you have to give strength to your wife, because as a mother she will be hurting even more.  Just bear the first prick.. I can assure you, your baby will sleep right through the transfusion and she will not even feel anything!.. so cheer up! :smile2

Just ACCEPT the fact fact, this has to be done.. and remember that, at least your baby  has some ways of treatment and if she is looked after well, the future is bright. Think of all the other misfortunate ones, who dont even have this much, and when you think like this, you and your wife will find  all the strength.
The first few months will be hard.. but yes, you will get used to it.. Your baby is God's chosen one and He has chosen you and your wife to look after His chosen one, because He knows that you can do it.

Please dont despair and always think positive.  Both of are young parents and there is a whole future waiting for you and your child and each day the possibilities of a cure is becoming stronger and stronger.
Now you can have a BMT, stem cell transplant, Exjade, etc etc.. so who knows, in another couple of years, your daughter can be completely free of Thal... so in the meantime, it is your duty to keep her as healthy as possible, so that she can avail of any curative treatment that might come her way in a few years time..and I know something more concrete will come up.

Hope that makes you feel better...  :smile2

Love
shikha

Bostonian,
     I am also very sorry that your daughter has thal, and that you have to deal with all the accompanying issues. Andy and Shikha have done a great job communicating encouragement and hope.   
     Remember that babies cannot talk, and that crying and screaming is their way of responding and communicating to things in their world. It sounds worse than it is; they are just expressing themselves, then when it is over, they move on. The actual needle going in is usually not that painful. She will be reacting more to the idea of holding her still, and being in different surroundings, etc.  I know it is unbelieveably heartbreaking to hear your baby cry, but she will adapt.  Babies are resilient, and she will feel much better after she gets transfused.
     Tap into your inner strength and be strong for your daughter. Good luck, and we will all be thinking of you at this difficult time.   Jean   :hug

Hi Bostonian

Well firstly I would like to welcome you to our online family.

Secondly, have faith your little girl will grow up to be a bright and intellegent young lady and both you and your wife will be very proud of her.

Initially it will be hard for all of you to get into the routine of the hospital visit. You and your wife will feel tired and confused. But trust me as time goes on it does get better and easier. Your little one will not understand for now and for some years to come. You will be her guidence and she will give you strenght.

What I recomend for you to take with you on her hospital visits is something she is attached too. Like a favourite toy, doll or book. These will change as she gets older. But always taking something from home its conforting. I remember when I was younger my mom use to take my doll and my doll also had thalassaemia. (lol, she use to get a blood test just like me)  Now I'm 37yrs old and I take my favourite book or magazine with me. (so i can catch up on all the hollywood goss)

There is a cream you can use prior to being canulated. The cream is called EMLA CREAM. I guess you can buy it from any pharmacy. I dont know what the price would be in the states. The cream is applied on the skin the area of where they will canulate about 5 to 10 minutes prior. It numbs the area.

Well I do wish you all the best of luck. You know were we are if you need any advice. I am sure with time things will be ok. Treatment has changed alot since I was diagnosed and it keeps changinng. I was diagnosed at 3 months old and started transfusions straight away. Your daughters symptoms are classical to most babies being thalassaemia major.

Chin up , think positive , and be there for one another. Your and your wife. We are here if you need any help. Let us know how you get on.

Miaki

Hi Maiki

If I may say so.. I dont think EMLA is good to use when you want the vein to show up.. any anesthetic tend to supress the vein.. these creams are good for muscular anesthesia.. like when you want to use Desferal..
The best thing is to use a warm bag on the vein.. so that the vein becomes prominent and easy for the needle to go in.. and nowadays caths dont hurt at all..
So cheer up Bostonian.. you and your wife and your baby will sail through all this before you even realise.

And I am positive, she will be cured in 5 years to come.....

Shikha

Hi all,

I appreciate all your support. My wife just called me a few minutes back. My daughter will have to go in for the transfusion tomorrow (whenever a bed becomes available in the hospital).

I was a bit surprised with the attitude of the current hematologist. Yesterday, she was not in office, so another doctor, who was backing up for her, told us that our baby needed the transfusion, but they would like to check her again before transfusing her on Sep 26. Today, when my wife called up the hospital to talk with our hematologist to check the status of the various tests that our daughter had undergone (Shikha, you will be surprised to know that out here also the phlebotomists have trouble getting to my baby's veins .... they poke her like a pin-cushion when they draw blood for her tests), she asked my wife to tell her if we wanted to get our baby transfused.

Aren't the hematologists supposed to tell us when to transfuse based on the patient's blood reports? We are not doctors, so how can we make that call. This really upset me. Is this normal? I think I will have to look for a different care provider for my daughter.

Regards,

Bostonian

Hi Bostonian,

I don't believe I have personally welcomed you to the group as of yet, so I'm giving you a great big WELCOME to our family.   :hug

I know you and your wife are scared, but the best advice that I can give you right now is that it's better to transfuse early than late.  I was diagnosed a bit later (9 months), and because I wasn't getting blood transfusions early enough, the bone in my head started to split due to the marrow working really hard.  Once I started getting transfused, the bones in my head went back together and I wasn't sluggish and cranky anymore.  Your little beauty will feel much better by getting transfused.  The treatments may not be wonderful, but she will feel better afterward.

I'm sorry that you guys are going through this, but please hang in there.  As long as she gets her treatments and you stay on top of her care, she has the ability to live a very long and prosperous life.   

Hi Bostonian

Welcome to your online family

Please make sure that the decesion of transfusion is taken in the correct time. I get the feeling that your doctor is not quiet sure of this . Why don't u take a second opinion? I know that sooner or later she will need tranfusion,but we should go through this when we REALLY need it.

I am telling you this because my son was put on transfusion and we went to the hospital and blood was taken from his father ( he was the doner ) and the blood was filtered, washes and irradiated and they called us to prepare ourselves for the transfusion in 10 minutes.  Then in this remaining 10 minutes i came across with a doctor in the lobby of the hospital ( this doctor is a well known doctor of thal and i wasn't able to reach her as she was out of town and therefore i went to another one who was good but her opinion is always not to leave a child with low Hb ) and i told her about my son's case and she  told me that she heard of him ( as both doctors are collegues, actually, the one who recommended the transfusion is the student of the doctor i meet by coincidence in the lobby of the hospital ) and her opinion is not to transfuse and to give my son a chance through folic acid and supplements as well as monitering his growth. Her opinion was that transfusion will always be her last and ONLY solution and she was right and his hb increased from 6.4 to 7 in one month and i pray that it would be more.

I know that my son and your daughter may not have the same diadnosis or symptoms, but i am telling you this long story to tell you how a second and third opinion is extremely imortant.  In my case, the second opinion stopped my son from being transfused only 5 or 6 minutes before it started.  

You have to feel safe and secure with your doctor and when you feel that you are in good hands, you will be stronger and all your doubts will disappear and both your wife and u will feel much better.

Hope what i said would be of any help to you
Take care and keep us updated

Manal

Thanks all,

I cannot express in words how much relieved I feel in your company. Both my wife and I read through the forums and draw strength from the various experiences and postive attitude that this whole community has.

I will keep you all posted on my baby's progress. We will have to go in for the transfusion tomorrow since it seems that the Hb is falling too rapidly than what the hematologist had initially expected. We will see what happens tomorrow. Since our daughter is so young, they will have to admit her to transfuse (it cannot be done in the normal infusion room). The clinic has indicated that they will call us up when they have a bed ready/available for our daughter.

Regards,

Bostonian

HI Bostonian

It looks that you daughter will have to start transfusions and Danielle is rght.

If you keep her on a low Hb-- 6-7-8 for a longer time, the marrow will be overworking to produce blood, all her organs will be overworking and hankering for blood, as a result, she will be really unwell.. her growth will be hampered.

In thal, the real thing is to totally supress the production of any faulty RBCs and let them grow on donated healthy blood.

if you keep the Hb high right from the start, she will not have any bossing of the bones on the forehead, she will gain height and weight normally.. I dont know if you have come across any under treated thals in india or elsewhere, then you will know what i mean. So , I know it is hard, please keep the Hb to  as normal as possible.. an hb level which any normal baby would have.

 These children can have transfusions every 10-15 days.. so dont get worried if that comes by.. because this is the only way out.

The pre-transfusion Hb level is the deciding factor when to transfuse your child.. and in months to come you will automatically know when the Hb is down and she will settle down to a particular frequency.

In India the doctors TELL you what to do.. but in the USA they SUGGEST what you have to do.. because that is the way it it there.

Do try and  find a clinical hematalogist at the Boston Childrens Hospital.. or try and consult Dr. Allan Cohen once.
And in case you are in India on a holiday.. well a visit to Dr. M.B. Agarwal is a MUST. Dr. Agarwal was my saviour.. without him, my daughter would not be where she is today. He is my God!  :smile2

And in case you are in the UK, do see Dr. Wonke or Dr. Shah.. ( or keep in touch with them with emails) ...they are more than capable of handling thals.. take their opinions.. your daughter is so young..  give her the opportunities that you can afford to give..

Please do let us know how the transfusion went...
Love
shikha

Hello Bostonian,

Good luck with the first transfusion  :hug

The haematologist can guide you with the treatment and provide you with information, but as you are the guardian for your baby you have the final say.  For example, if you were a thal major and your religion forbade blood transfusions (Jehovah's witness i think) but the haematologist thought it was the right treatment for you, the haematologist could not say "You must have a blood transfusion".  They can recommend one to you, but you have the final decision about what treatment you do or don't have.  That is the way I understand it!  You can then gather all the information you can from your treating doctor, your support group here, and anywhere else you like to inform your decision about treatment.

Cheerio!

SalD.

Thanks all,

She is going in at 10:45AM (EDT - local time in Boston) fr the transfusion. The RN in charge of transfusion has indicated that it might take most part of the day, they have to fisrt draw her blood and do some cross-typing for a match before they can start the transfusion. Also, since she is an infant and they will have to drip in the blood so as not to overload the heart. I will let you guys know how it went.

Shikha, SalD, you guys are right, I had misunderstood the hematologist. She wanted us to have the transfusion, but was trying to see if we were OK with it. I think I was a bit emotional at that time and had over-reacted.

Thanks a bunch,

Bostonian

Best of luck to you and your wife and especially your daughter, today Bostonian. Starting transfusions early is the best strategy and will result in normal development. It's not an easy thing at the start but it eventually becomes routine.

Early diagnosis comes as a shock to the parents but it also means early treatment, which is a very positive thing for the child. As Shikha mentioned, if you see children who were not treated early in life, you immediately see the differences in the shape of the head and the mouth. Early treatment is a blessing and even though it will be hard, maybe even harder on the parents to watch, it is the best thing that can happen.

In the US you will be asked before any treatment or procedure is undertaken. It is always up to the patient or guardian to agree to, so always expect to be asked instead of told what will happen. Patients have a legal bill of rights in the US and you will often see these posted in hospitals. You have the right to know why anything will be done and an explanation why. You will find that every good doctor will happily explain anything and also appreciate your own efforts to learn and understand what is taking place and why. The patient or the guardian will always be the one making the final decisions.

We'll be there with you in spirit today so please take our hands and squeeze hard when you need to.