Will start first transfusion - how did (anyone) prepare their child?

My six year old daughter is being scheduled next Wednesday for her first transfusion. I'd like to hear from other onhow they prepared their child both emotionally and mentally.

My daughter was only diagnosed this November with Beta Thalassemia Intermedia. It was quite a shock to all of us. I have always known I am a beta thalassemia carrier, so I made sure my husband was tested before we had children. He tested positive for Hereditary Persistance Fetal Hemaglobin, but not beta thalassemia. The genetic counselor assured us (11 years ago) that we would not have a child with beta thalassemia. After reviewing how genetics works and covering the possibilites we were told we would have a 25% chance of having a child that was both a beta thalassemia carrier and HPFH but that they would be pale, have an enlarged spleen but a relatively healthy life. My husband is being retested for genetic mutations that they didn't catch 11 years ago.

My daughter has become severely aneamic, is constantly tired and is very pale with a yellowness to her skin. Her spleen has enlarged to 4 times the normal size. The bone marrow in her facial bones has already started overproducing red blood cells. She needs the transfusion, but how do I prepare her for it?

I'm certainly no expert and I never got transfused until my adulthood, but I can say for sure that the most frightening thing to me has always been the unknown or the surprise! effect. 

I actually never took to blood draws too badly because I knew it was to help watch my thalassemia and the people who drew my blood were usually very very gentle with me and patient.  On the other hand, I hated shots because the nurses would try and do it when I wasn't looking.

Something I would recommend you do is contact your doctor or the nurse or perhaps the transfusion location's doctor/their office/their nurse/their social worker if they have one and ask for their advice on how to prepare your daughter.  Additionally, they might have a few particularly child-friendly staffers who would be able to help make the experience more kid-friendly, approachable, and understandable.

Here is a link from the Children's Hospital in Oakland that might be of use to you:

http://www.childrenshospitaloakland.org/child_life/life_collins.asp

It talks about how some child specialists have approached such issues - explaining and preparing for major health-related procedures.

 
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Two things that I can think of at this particular moment:


What is your daughter's current understanding level in regards to her thalassemia?

If your daughter already knows about her thalassemia and that it can make her really really tired, you could try explaining to her that there is something the doctor can do for her to help her feel better and you can explain the basics of the transfusion therapy.

When I was younger and even now as an adult, I have always found comfort in knowing why something has to happen.  Even if I disapproved of it (getting blood drawn when I was younger, for instance), I would accept it a lot easier.

If your daughter can accept that she is feeling very tired indeed and can understand that her thalalssemia is responsible for it and that a transfusion which is ABC (insert age-appropriate explanation of a transfusion here) can make her feel better, then that will help her be more comfortable about having a transfusion done and will hopefully also help her accept the transfusion procedure itself (getting poked, etc).


How does your daughter feel about getting blood drawn?

If your daughter takes blood draws okay enough, in the process of explaining the transfusion, you could also explain that the transfusion is like a blood draw, but it is giving her the blood instead to make her feel better - one prick and it's done.


Some general thoughts:


In my opinion, especially for children, trust is a very big issue as is a fear of the unknown and unfamiliar when it comes to medical procedures.

If she can trust you and those who care for her (doctors, nurses, the people who draw the blood, etc), then I think it will go a long way in boosting her acceptance and compliance with thalassemia and the medical procedures sometimes necessary to manage it.

With that said, some ways to possibly build and foster trust and to help make the unknown less scary for her (and these are just examples):


- If you promise her no more than 2 pokes, make sure the people who will be poking her know the same and will honor the same promise.


- Try to get a child-friendly team to be working with you and her for the duration of the transfusion.  If they can work with her to help ease her fears and apprehensions by explaining things to her honestly and in an age-appropriate way, so much the better.


- Let her 'be in charge' for the day of the transfusion.

I don't mean let her boss people around; that's not it.  But maybe something like letting her plan what she would like to do while getting her transfusion and perhaps schedule in a rewarding treat along with it that she gets to choose. 


- Pack a special bag just for when she needs to be in the hospital (or wherever away from home for an extended time

This will help her associate the transfusions with something more pleasant and perhaps even something special.  Let her choose some of the things to pack - a favorite book, paper and pencils, favorite toy, favorite stuffed animal, a security item of any sort of her choosing, etc - and it will help her feel in control of the situation and will make an unfamiliar environment more familiar.


- Bring along a special home decor item

Some places just... don't look very appealing (one of the hospitals I went to had all white walls with nothing but medical posters - yikes!), so perhaps, a favorite poster (if she likes them) or something to put on the wall or sit on the table would help add familiarity.


- Take her on a tour of the place beforehand

If she has accepted the idea of a transfusion okay enough, then maybe you can ask if she would like to see the place first and have a nurse who will tending to her on the day of her transfusion (or a nurse who is child-friendly in general) give you both a tour?  Conversely, if she's still scared of the idea, maybe a guided tour with a child-friendly nurse will help?


In conclusion, I definitely would get in touch with the place she will be getting transfused at and pursue the idea of having her first transfusion experience be as stressfree and child-friendly as possible. 

All the best to you and your daughter!

I would like to refer you to a post by Sharmin about what to expect during the transfusion. I will emphasize that you physically examine the blood bag yourself every single time to make sure it is the right type and has your child's name on it. Parents must be constantly vigilant about this. Mistakes do happen but will not if the blood bag is double checked. (This advice comes from Lisa many years ago).

http://www.thalassemiapatientsandfriends.com/index.php?topic=3202.msg32488#msg32488

Hi Alexia!

I had my first transfusion as an Intermedia when I was around 20 years old.  I remember I would joke about it and say I need to get a red IV so I would feel better and have better color on my skin.  There were kids who have severe anemia or leukemia patients that I would meet at the ER and I would tell them that.  That's the easiest way to make a child feel better about getting a huge needled IV in her veins. 

My mom then would check the blood 3x if its exactly the same blood type I have before they proceed with the transfusion and never neglect that.  Wrong blood can cause severe if not lethal damage.  They have now what they call compacted RBC which is a purer form of blood especially used for transfusions on Thals and other RBC related disorders.

I hope your daughter feels better soon.  God Bless!

I want to Thank ALL of you for responding. I have been logging on intermitantly since I first posted my question to see if anyone would reply.

 HbH, thank you for your detailed guidance. I have called the nurse in homecare and she will help me explain things to my daughter. We will allow my daughter to lead us and let us know when she is ready to start the transfusion. The nurse has assured me noone wll pounce on her. I am taking your advise and bringing a backpack filled with her favortie things. I have talked to her, but it is difficulat to gage how much she really understands. I have told her that we have red and white blood cells. That the white cells are our soldiers that fight germs and that the red cells carry oxygen or energy to our body and that she does not have enough energy so we are going to give her more red blood cells. She seemed to accept that. She even understood that it will be done through another prick. But she has started to have nightmares and calls out for me at night and wants me to sleep with her.

Andy thank you for that caution. OMG, I will definately check the bag. I didn't even think of that. (Why are the "official Thalassemia sites so bare of important details like this. Sorry I am just frustrated with doctors and organizations that refuse to arm people with information. Information is power.)

Lei what a great analogy, you are getting your Red bag. I will call  my daughter's her energy bag. Thanks so much I aprreciate your comments.

The unknown can be a scary thing at times; my best wishes to you and your daughter!

I am glad to have been able to provide some suggestions; I hope things go smoothly for you both and that this smoothness will set a precedence for the future.



RE:  Checking the blood bag

Definitely check the blood bag.  Even in the United States in a hospital setting, mistakes can sometimes happen, though during my last two transfusions, the nurse who was setting things up for me triple checked herself and I had to confirm who I was, confirm DOB, confirm bloodtype, etc.

One more thing I thought I might mention:

I am unsure of the environment that the transfusion will take place in (hospital setting?  outpatient setting?  elsewhere?), but if your daughter needs to share a room with someone (like at a hospital) I would highly suggest looking to see that she shares a room with someone age and situation-appropriate.

Highlight the next block of text between the two >> if you want to see why I make the suggestion I do, otherwise, just skip it.

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The last time I shared a room with someone at the hospital for my transfusion, I shared a room with a terminally ill cancer patient whose doctors gave her the diagnosis while I was still in the room (on the other side of the room behind the curtain).  As my roommate tried to be brave about the whole thing, I ended up spending the entire night trying not to cry my eyes out for my roommate.  We bonded over breakfast the next morning, but that had got to be the most depressing visit to a hospital I have ever made as a patient and I was well into my adulthood when this happened.  Your daughter needs to be uplifted, not put into a situation that will encourage her to have unhappy thoughts is what my opinion is.

>>  

I am happy to report that my daughter will have a room to herself for the first transfusion. It is in a hospital setting but in an out-patient wing. There are other children undergoing transfusions, but most young or older than her. The nurse agreed it was best to isolate her for the first time, make the experience her own, rather then influenced by others.

I am still anxious for Wednesday. I downloaded the "Standards of Care Guidelines for Thalassemia" that Andy refered to in another column, and I have read Sharmin's first experience. I am on information overload, I am trying t retain everyting without going insane. I have never absorbed so much information....

Again thanks to everyone that took the time to reply.

Hi Alexia

My son was 1 year old when he had his first transfusion. At that time we didn't have to prepare him but in fact prepare ourselves. Today my son is 4 years old and doesn't even cry when the IV is being fixed which is really brave on his part considering he gets a minimum of 2 pricks sometimes even 4 to find a vein. I tell him about his tx date 2 days prior to the appointment. I center the conversation not on what we are going to do in the hospital but rather on what we should do once we are out of the hospital. That day he gets to decide how we should spend the evening. He actually looks forward to his hospital visits.

Children do question and you should give them age appropriate answers. At the age of 2, I told him he has to get blood to make him strong . But this answer didn't work at the age of 4 coz he threw a few stunts to prove that he was strong anyway. Then like someone suggested here I told him the blood which his body produced was funny and doesn't do the work it should. He was very amused with the answer and it did shut his questions for a while. Now his question is why is his blood funny while his sister's isn't.

lots of well wishes for your little girl
maha

Hi Alexia,

Based of luck for the Tx...All the previous posts sums up the things to do and look for....As Maha said, please prepare yourself 1st. Be positive about the whole thing. Let your daughter have say what she wants to do when the Tx is going on and after Tx is done. Make her drink a lot of fluid before Tx...it is easier to find the vein. Also using emla helps with the IV insertion.

My daughter is now 4 and we always talk about the fun things she is going to do at the hospital on the day of Tx. I also tell her pretty casually a day or two before Tx that she needs to go for Tx. that helps to prepare her mentally.

Know that your daughter will be fine. You be strong....best of luck...

Hi Alexia,

Hope everything went well today, please update us

manal

Please keep us posted.  My son was 3 months old when he received his first transfusion.  It was given quite suddenly so we did not have a chance to prepare ourselves or him.

Best of luck, I hope everything goes very well.

Sharmin

Well, its taken me some time to reflect on the first transfusion. It didn’t go well but the results are amazing on my child. The next day I saw a burst of energy and she even had red checks. Wow its been a long time since I saw red checks on my daughter.
I expected a long day and it was. We arrived at the hospital at 9:30 AM. We were shown to a small but beautiful room with a crib and a lazy boy chair. We met with a child care specialist and discussed with my daughter what was going to happen. We even put a catheter into her doll to show her exactly what was going to happen.
Unfortunately she has a huge fear of needles. When it came time for her to actually receive the needle and catheter to be used for the transfusion she started being more agitated and highly anxious. I held her firmly while the nurse inserted the needle. She cried and struggled. I thought the worst was over, but the nurse started probing in her vein and my daughter started screaming and struggling more violently. The nurse was trying to “thread” the catheter through the vein but with my daughter struggling the vein burst.  We had to try again.
I knew things were not going well. Try to convince a 6 year old to be brave one more time so we can try again. The nurse decided it was best to try the vein in the crock of her arm, instead of her hand. The vein was a good size and would be easy to access. We couldn’t afford to botch up another vein. We had to have success or we would taint her experience.  No amount of coaxing could calm my daughter down. She wanted to leave to go to school and see her friends. She refused to lie in the crib she wanted to sit on my lap on the chair. In the end we got her on the bed, rolled her up in a blanket to keep her legs still from thrashing about. Two nurses held her down, I lied down beside her to comfort her and another nurse jabbed her arm again.   It was so dramatic. My daughter called out and told me she didn’t love me anymore, she hated me. (I know that its just a child’s anger talking but boy did it pierce my heart. ) The worst was over. Thank God. Blood was drawn and sent to the lab for matching. We went for a quick lunch and returned in one hour.  The blood hadn’t come down from the lab yet.
We did crafts together which were fun, but I remember thinking we are doing too much, the pacing is wrong. When the blood finally came down it was 2 PM.  I blessed the blood and we said a little prayer together. She got hooked up and stayed in my arms the whole time in the chair. She was to receive 240 units. They kept checking her vitals every 15 minutes, temperature and blood pressure. At 4 PM she started running a fever. They immediately stopped the transfusion and sent blood back to the lab. The doctor was not too concerned; he said she may have something viral like a cold that she is fighting. The nurse seemed more concerned and kept us an extra hour to ensure no rash on her body. My daughter only managed to receive 140 units, there was 100 units left to take.
The car ride home was just as horrible as we were stuck in traffic due to the extra snowfall during the day. She cried and screamed at the cars to move, she missed her sister and wanted to go home. It was so heart wrenching, but I knew she was extremely tired.
Thank God children are more resilient then their parents. She went to school the next day, she was happy and jumping and had beautiful rosy checks. She looked healthy and vibrant.
I have told her how healthy she looks. She is so happy too. The only thing that broke my heart is when she told me we wouldn’t have to go to the hospital again. She does not know that this will be a regular event, at least monthly…I know I should tell her. But I am so overwhelmed with my own emotions; I want to tell her matter-of-factly and without crying in front of her. Everything has happened so fast I am still in shock.

...One more thing...

I want to thank everyone that took the time to reply. You have no idea how comforting it has been to hear from other patients and parents. Your guidance an reassurances are appreciated.

Again many many thanks to all, Alexia.

Dear Alexia,,

You did a wonderful job   

I know that it was a hard expierence for you and your daughter but it won't be the coming times because there is an important fact which is ....everything becomes easier with time and the more we practice something,the ore we do it without thinking of it.

The most difficult one had passed and now we should be thinking of ''ways'' to normalize things for her. One of the thiings that help is to act normal and avoid showing that she is supposed to do a ''a big'' thing in addition to giving love and confiedence. Giving her her doll and telling her to start giving her transfusions and teachig her to tell her doll that this is important to her will make these words familiar to her later on. This way has helped a lot of children to cope.

Anyway, i am happy that she feels better now and that she looks great and one more thing you are a wonderful parent

manal

Thank you Manal for your post.

Hmm,...you have given me good advice. I will try it with my daughter. She seemed very interested in giving her doll a needle. Maybe if we play act the whole transfusion process it will become something we get used to. 

In the days since the transfusion, I have to say she looks good. She is full of energy.

Alexia