The Bartlinski Bunch

" Teresa "

" Teresa "

Teresa "Fang Fang " Bartlinski

Teresa was born on December 25, 2006 in China. She was born with a very complex heart condition. In July 2010, GOD added Teresa to our family through adoption. We have been blessed with 9 wonderful children. Gods grace has woven us together as a family. Upon bringing Teresa home from China we unfortunately learned she not only needed a heart transplant but also a lung transplant. Her doctors feel she would not survive this operation. Please help us to pray for a miracle for Teresa's heart and lungs to be healed. She is a very special little soul who has touched so many lives around the world ...

Friday, April 12, 2013


Boston Childrens Hospital sure has been hearing a lot about the Bartlinski girls lately .

After Teresa's last heart cath. and MRI in January we asked the the transplant team at CHOP  to send all her info. to Boston for  a second opinion .   Not that we did not trust CHOPs  recommendations , we just wanted to see if Boston agreed . 
Boston and CHOP are 2 of the best pediatric cardiac hopsptials .  The Doctors at both hospitals are amazing .
The transplant team at Boston agreed with CHOP and said Teresa's transplant would be considered very high risk but they also felt it was her only option .  I guess what I really wanted to hear was that she would do fantastic with the transplant and breeze right through it  without  any complications . 
The reality is a heart transplant for Teresa is very high risk but it is her only option .  A heart transplant is exchanging one kind of heart disease for another . It is not a cure .  Rejection is the first major danger following a transplant , second is coronary artery disease and third is cancer .  If she can beat all of these odds ( and I know with her strong desire to live life to the fullest she will )  she will have many happy years of life ahead of her   .  When I think of how far she has come ( from being told she would never be a candidate for a heart transplant and to just take her home and make her happy ) to where  she is now , waiting for a new heart , I am in awe at what God has done in her little body .  So even though Boston did not say she would breeze right through it we are still overjoyed that they did agree with CHOP .   Two years ago she had NO options . 
So as we continue to wait for Teresa's new heart we are treasuring every minute we have  together as a family  .

Little Miss Gemma Rose had her monthly blood transfusion Wed. and we finally received the results from her Ferriscan ( special MRI  that measures the iron content in the liver and heart ) that  she had  in February . She has this test  every year along with a liver biopsy .  (Gemma has Beta Thallassemia major .  A condition that is hereditary .  Her bone marrow does not produce healthy red blood cells and as a result she becomes severely anemic requiring blood transfusions every 3 weeks  .)  She will have to endure the transfusions for life or until a cure is found .  As of now the only cure is a bone marrow transplant .  A result of receiving so many transfusions is excess iron build up in the liver and heart .   Gemma's ferriscan results reveiled her iron levels are still dangerously high .  Her Hematologist has been trying for the past 4 years to lower them through different forms of treatment called Chelation .  Unfortunetly they have not been working .  So this past month Gemma's Doctor contacted Boston's  hematology team to discuss Gemma's treatment options .  Her Ferriscan results doubled from last years results putting her at a very dangerous level  .   
At this point we are unsure if her body is able to absorb the chelation meds. and effectively eliminate the iron from her body .  Boston performs  a  special procedure to measure the out put of Iron from the body but unfortunately Hopkins has never done this kind of testing .
The plan is to add a different chelation  med. along with increasing her daily infusion.  We also will see if the testing can be done at Hopkins and the information analyzed in Boston .   If she still has high levels  then she will have a port put in to increase her meds even more .  As a last resort if these other options are not effective  we will further discuss a spleenectomy  or bone marrow transplant .

Looking at Gemma you would never know all of this turmoil is going on in her little Budha belly .   To her life is one big rainbow ( her favorite color ) . She is one sweet little kissy face girl .

One thing we have learned through all of the girls medical conditions is that their diseases do not define who they are .  They are normal little girls who have ALL had to learn how to overcome diversity .  Their lives involve a few more Doctors appointments than most children but to them it is just a part of their week .  Gemma knows she feels better after she receives her blood transfusions .She also works harder than anyone to be able to speak correctly .  Teresa knows if she wears her oxygen she  feels better .  She  wants to have a new heart so she can ride her bike without oxygen and to also look like a real princess without having to wear  oxygen .   Emilia never believed she could not ride a bike because her legs do not bend .  She taught herself anyway.  Lucy does not let her size ( she is 1/2 the size of a typical  9 year old) stop her from anything . She believes she can do anything even with her little crooked body . Mary's job in the orphanage was to take care of the younger children  . I believe God gave her a very special gift, a caring heart for others  .  She is the kindest most caring little girl who works so hard to always help others .  She also works really hard to speak correctly and overcome her speech problems .  

After we had adopted Gemma and we were in the process of adopting Teresa someone asked us if we considered how her adoption would affect our other children .    They were worried that the children would also have to make great sacrifices  and it would affect their lives negatively .
I guess I always thought how could loving one more cause anyones life to be affected negatively .   God is love .  Love is God .
 All of our children will tell you that their lives have been changed .  Changed in a way that only God could change them ...through adoption .

God has allowed them to see things that most children will never experience in a  life time . Some of it is pain and suffering  and this has been very hard  at times . But through it they have learned kindness, compassion , carring, and most of all Love.  They know life is a gift , something to be cherished and never taken for granted .   They don't look at others who are different and ask what is wrong with them .  They know our differences are what make us who we are,  unique and perfectly created by God.


Anonymous said...

Great post! I couldn't agree more with your perspective. I'm praying for Theresa every day!
Rebecca (mom to 2 thal major gals)

Kristen said...

Thinking of you and ALL of your beautiful, strong-willed little ladies! ....and I love that Gemma's favorite color is "rainbow!" HAha!

Rita and John said...

What a beautiful post. We are keeping Teresa and Gemma and your family in our prayers.

Anonymous said...

Teresa and your entire family remain in my daily prayers. What a beautiful post! Theresa from Georgia

Wanda House said...

Thank you for this wonderful post and the update on all of your precious your ladies. God's best for you and all the rest of your family. Coutinued prayers are going your way.

LA said...

HI Ann,
Beautifully written and our prayers are with you all daily. We believe in miracles here, some are major ones and other are what I call mini-miracles. You have already experienced the mini ones defying the medical odds, now we will wait for His time to do the major ones!

God bless,
Lee Ann and family

Aus said...

Ann - that was simply beautiful! Adoption is a life changer for everyone - it just is - but like all change - it can be either good or bad, that end result is simply up to the individual to make the choice!

As always we hold you and all of your family in our hearts and prayers. I know I say that - but it's true - you simply amaze us!

hugs - aus and co.

Anonymous said...

You folks are incredible people. I will continue to pray for each of your wonderful, beautiful, little ladies! You are all true inspirations!