Toddler's First Transfusion

Hi all. We have not written since PrincessM was diagnosed with Thalassemia Major at birth. We were lucky enough that although her genetic testing indicated she would have major, she actually was clinically classified as intermedia. Her hemoglobin stayed between 7.9-9.1 and her growth was normal. Her physician had “wait and watch” approach that we were very comfortable with.  We visited with him every 3 months.

Today, she is almost 18 months old and we visited with the hemo. Long story short, PrincessM is not growing in height, her weight is normal, and her head circumference is too large. Her head has grown abnormally at a high rate in the last few months. The hemo believes this is because of the bone marrow cells causing the expansion of the head bones (I don’t even know if I’m repeating the right info; I was too stunned).

So here we are. First transfusion is next Thursday morning. We welcome any suggestions to make the process easier. As you all know, doing the first transfusion is lot harder when they are moving toddlers. I really don’t know what we will do. She can’t even stand to have a bandaid on her arm, how will she tolerate the IV line?

Please keep our daughter in your thoughts and prayers , thanks. 

Princess M,

I understand all that you are feeling as you prepare for your child's first transfusion.  My son has been transfusing since the age of 3 months.  The early transfusions were not easy - but they did get better over time. 

My son is 15 years old now, and below is a way of coping that I wrote many years ago for a good friend of mine who has 2 thalassemia major boys.  I hope that it is helpful to you. 

Most importantly, remember that children look to parents when they decide how to act.  If you appear nervous or afraid they will be afraid.  If you appear to be pitying them - they will learn to feel sorry for themselves.  You must remember that with proper treatment - people who have thalassemia can live very healthy, full and active lives.  When you look at your daughter that is what you must focus on. 

God bless and much love to you and your family,

Sharmin

Here are a few things to expect during the first transfusion.  Baby will not like getting the IV at all - babies veins are tiny and it may take several attempts to find a vein.  Babies become very distressed, scream and sometimes hold their breath when they are upset.  Just try to remain calm, the baby will feed off of you and learn to be calm.  Once the IV is in and he is taped up you can hold him and get him busy doing something else - so he can quickly forget the poke.  Try to smile and be playful so that he is not scared that something bad is happening - even as he grows this will be important in order to keep a positive attitude about thalassemia for him and for you. 

IV's sometimes don't work in the hands, at times they need to poke feet (which babies hate!) - and I have seen some babies get it in the head (Lil A has never had a poke on his head but another little girl at our hospital does get it in her head). 

If he is well hydrated and is playing a lot before the poke his blood vessels will open up and the poke will go easier than if is dry or sleeping.

The nurses will start the IV, and probably give him saline before starting the blood very slowly.  Ari will have a bracelet (lil A likes to wear it on his ankle rather than his wrist because it causes less attention if he has to wear it to school).  Blood is tested the day before the transfusion, Ari will be given the bracelet with his cross match number on it - when you go in for a transfusion the nurses will check the unit against the number on his braclet.  Two nurses should be there to check the number and sign - at this time you can also compare that the blood type on the bag matches his blood type and number on his bracelet. 

His vitals - blood pressure, temperature, heart rate etc will be checked before the transfusion, and then every 15 minutes during the first half hour - then every hour until the transfusion is complete.  If you notice any hives, temperature change or sudden change in behavior you should let the nurses know. 

It is a good idea to use Ari's own clothing and blankets because hospital blankets and PJs sometimes give babies rashes - so it is hard to know if the rash is due to the linens or the blood.  Lil A's skin would get irritated due to the linens so I started using his own and the irritation stopped. 

Ari won't like the blood pressure cough on his thigh tightening up, the poking and prodding and perhaps the cold fluid going into his vein - but by holding him and playing with him a lot you can keep him distracted.  Soon he will forget about the transfusion and get busy playing.  Lil A actually liked transfusion day a lot as a child - by the time he was 18 months he learned to drag his IV machine around and play with all the toys.  He enjoyed having a special day with mom and dad at the hospital watching movies and having treats that he couldn't have other days. The nurses spoiled him too because he was a repeat patient that they got to know well.   Be sure to bring your favorite coffee and a good book for yourself so that you can enjoy your time there as well - it will help you to form a more positive attitude about the experience which will then trickle down to Ari.  He may nap for some of the time that he is there so you'll need something to do during that time. 

It is nice to have visitors - grandparents - uncles & aunts - however - no one should look sad or act as they feel sorry for him.  The should act like there's a party going on in his room and play with him. 

Once the transfusion is done, the IV will be removed - vitals will be checked.  They may keep him in for another hour to watch for reactions or fever.  Some centers do a post transfusion hg (our center does not do it because they think that the extra poke is not worth upsetting the child) but other centers do.  For the first few transfusions it may be a good idea to do the post transfusion blood test so that they can determine a good pattern for Ari's transfusions. 

I hope that this gives you an idea about what transfusions are like and how to deal with them,  I will keep posting more as things occur to me:).

Sharmin

Hi Princess M,

I have 2 boys who have thal major.Now 17 and 21. I totally agree with Sharmin. You need to show your strenght and confidence for your baby to feel the same as she grows. My older son did cry alot, mostly cos he didnt like strange people handling him..but that soon stopped as he got used to them.The little one looked up to his brother and seeing he was ok with it, he wouldnt get upset at all.   I used to hold them in my lap and they always like to see the whole process, they wouldnt look away as they liked to know excactly what was going on. Your baby will pick up the way you feel, so try to make it a 'fun' experiance even though you may be feeling otherwise. Take with you her favourite toy, her favourite food, talk of all the toys she'll have to play with, favourite thing to watch, get her familiarised with the nurses/staff. They do get used to it quickly just all depends on you.

Emby

Sharmin and Emby,

I thank both of you from the bottom of my heart for your kind words. I know it sounds crazy but it made me feel amazing that both of you have teens/young adults with thal. I think that's the thing that upsets me most and my biggest fear when I look at my Princess: that she won't be able to do whatever she wants in life and experience all the great things like her parents. Although I know with proper treatment she WILL ... your children are testament to that.

I have been trying to get all the tears and fears  out of the way at home this week, so I can put on a brave face that day for her. Thank you both again

These are all great words of wisdom and what Sharmin initially posted has lots of great info in it.  My son is almost 2 and has had 16 transfusions to date and while it never gets easy it does get easier.  You will get a routine down and so will he.  Be calm and be a strong advocate for your little one.  We had to be very strong advocates to ensure he was getting the right care and that we were comfortable with the people who were assisting us through the process.  Bring things that will comfort him- for us when getting the IV it has always been a bottle or sippy cup of milk and putting on his favorite movie (Toy Story) for distractions which works great.  Here we are a year later and the hospital even got Jovi a present for Christmas with Toy Story wrapping paper.  If you need to talk email me at miked4136@hotmail.com.  I would be happy to share our experience.  Good luck and just know that it will be okay!

Hi all! Just wanted to check in... thank you guys for all the support! It's been one week since PrincessM's transfusion. Everything went well for being the first time.

They have ultrasound to guide the IV. They blew the first vein but got the second one. She was really upset [naturally], but it was also naptime so she fell asleep. The nurses had taped up the IV so I just pulled her sleeve over it and when she woke up she didn't even realize it was in. By the time they started blood she was watching her shows on the IPad. I had already taken her to the playroom before and after they started the blood we went back. She did great overall and actually the thing that annoyed her the most was the blood pressure readings. At the end of the day after they removed the IV they had to re-immunize her for hepatitis, at which point she just lost her patience. We'd been there for over 8 hours at that point and I can understand her frustration. As soon as we got out of there she was fine.

The nurses and everyone were so great! Incredibly professional and caring. I feel so blessed to have this team. M is doing good. She is sleeping more soundly, and the color in her hands and feet is PINK!!!! Her eyes are less yellow and she is less moody too.

Anyhow, thanks again for the great suggestions and all of you were right on the money about special treats  We bribed with french fries and a chocolate milkshake this time 

Well done you...and well done Princess M!
Bet the treat was really for you...

Emby

Princess 'M'

I am so happy to hear that you did well with your first experience.  That is so great!  In the beginning your experiences may vary - some days may be a little tougher than others but overall it's really not that bad.  Seeing them all pink and energetic is truly worth it.  You will notice her lips and the inside of her mouth is more pink as well. 

I can tell when Little A's needs a transfusion by looking in his mouth - if his lips and tongue are pale his hemoglobin is low and if his lips and tongue are pink his hemoglobin is good. 

Super proud of how well you did!   

Sharmin

Thank you guys! My girl is finally attempting to walk on a regular basis! She is showing wonderful physical progress... Happiest feeling to see her trying! I know she feels lonely when others her age are running and climbing and she can't. Hope that day comes soon that she will join them.

Her hematologist has decided to change her from a 3 week to a 4 week transfusion schedule because of her retaining a decent pre-HB at 3 weeks. Anyone else experienced the same with their child? I trust his judgement ... Just wondering if this is something to expect... The varying time lengths between transfusions as M gets older?

Hi Princess, my daughter is 3 1/2 and goes every 3 weeks. Pre-Trans she is between a 9.2 and 10.1. About a year and a half ago (when she was 2) the Doctor wanted to try every 4 weeks. It only lasted about 2 transfusions because her count would drop below a 9 pre-trans. See what happens and best of luck!

James

It is normal to adjust the duration of blood transfusion.

Generally, the gap is between 4-5 weeks. I say, more often it is 4 weeks.

hello Princess 'M',
our daughter is almost 8 yrs old and she is on every 4th week Tx schedule with Pre-Tx Hgb level between 9 & 10. if the Pre-Tx HGb level is below 9 on consecutive months, then we change the Tx interval to every 3 weeks till we see that her Pre Tx Hgb level has returned to 9 and above.

With all the modern chelation and thalassemia care available in US, your daughter can do any or everything that she wants to. Just make sure to keep her Hgb above 9 and proper chelation when the time comes to chelate. If you want to talk more and get more information, please PM me.