Daily archives for May 7th, 2020

Thalassemia – A Parent’s Perspective

Thalassemia – A Parent’s Perspective

We caught up with Brooke Henningfeld, MAA Advocate and adoptive Mama, to pick her brain about parenting an adopted child with Thalassemia….

The Henningfeld Family

Brooke, can you tell us a bit about your son, Reid?

Bao Sha Hao came into the care of his orphanage at the approximate age of one. Our family met this child we lovingly refer to as Reid Sterling ShaHao Henningfeld in Guangzhou, China on his 6th birthday!  Reid was born in Shenzhen with beta thalassemia major, the most severe form of thalassemia.  He is now nearing thirteen and thriving!  When we were deciding to adopt a child with thalassemia, we didn’t really have any concerns because our hearts were so drawn to the photos and videos we saw Madison Adoption Associates advocating for.  We weren’t thinking about his special need, but saw him for the adorable little boy he was!   Thalassemia didn’t, and still doesn’t, define who Reid is.   He’s never really had any limitations because of his medical need.   My husband, Rick, and I knew we had good medical insurance and an excellent children’s hospital within an hour drive.  We had learned a fair amount of information from adoptive parents of children with thalassemia that had gone before us, but figured we’d learn as we go; that we did, and we continue to do!

Reid’s referral photos

What is thalassemia?

Thalassemia is a big word, but it isn’t a scary special need.  It is, in fact, a very manageable medical condition.  The first few months after a ‘thal’ child comes home can be a little overwhelming, with trying to get the child’s hemoglobin to a stable level, going to some extra appointments that ultimately become annual appointments, and trying to get into a regular transfusion day schedule.   All of this becomes another part of routine life quite quickly though!  There are various forms of thalassemia.  Some require regular transfusions and others don’t.  As I already mentioned, our son has the most severe form of thalassemia.  Because Reid has the most severe form and his red blood cells do not make hemoglobin correctly, Reid needs regular transfusions.  Hemoglobin is what moves the oxygen around our bodies, which helps give us energy.  The blood transfusions Reid receives keep him alive and are 100% necessary!

The downside to the transfusions is that it puts a lot of extra iron into Reid’s body.  Transfusion dependent patients often have iron overload and need to take a daily chelator to remove the excess iron from their bodies, which likes to store up in organs like the heart and liver.  This can be damaging to these vital organs, so the chelation medication is necessary when the iron levels are higher than they should be.  There are currently three chelation options.  Two of the chelators are oral medications and one is not.  Our son has taken both oral chelators.  At one time, he needed both at the same time.  This is another part of our regular routine and has never really been much of an issue for our son.  To monitor the heart and liver iron content, Reid receives an annual MRI.  In addition to this, we visit with the ophthalmologist and ENT annually for a quick check of the eyes and ears, due to risk factors from one of the chelation medications he’s been taking.   

How often are transfusion dependent thal children transfused?

Reid

Transfusion dependent thal kids receive a transfusion approximately every two to four weeks.  The younger children can often make it every four weeks before needing a ‘fill-up.’  Older children and adults generally need to go every two to three weeks.  This varies from person to person and by the type of thalassemia a patient has.   I would recommend any family considering adopting a child with thalassemia to be prepared that the child could have the most severe form of thalassemia and to be prepared for transfusions every two to three weeks.  Transfusions are scheduled based on the child’s current hemoglobin levels, and the amount of blood the child receives is based on their current weight.  Reid has been transfused just about every three weeks since he came home at age six.  Occasionally, and often in the summertime, his hemoglobin levels get a little lower than we’d like to see and he goes in every two weeks for a few transfusions and then is back to the every 3-week rotation.  Normally, we can bank on every third Friday and we plan life around those dates.  We are fortunate that our clinic is very open to us changing the day of the week we come, if we needed to do that for any reason.

What does a transfusion day look like? 

Reid on transfusion day

Well, it’s going to look different for every family for multiple reasons.  For our family, Reid and one of his parents generally leave the house at around 7:30 a.m. on a transfusion day.  We make the 50-60 minute door-to-door drive to Children’s Hospital of Wisconsin-Milwaukee.  We leave our car with the wonderful Children’s valet team and walk straight into the hospital (except during the corona virus), check-in at the front desk, and head up to the amazing 5th floor MACC Day Clinic for children with cancer and other blood disorders for our 8:30 a.m. appointment.   We check in at their desk and get sent to a private room.  Within minutes of getting into the room, Reid has his height and weight checked.  We then wait for the team to come in and draw blood for the labs needed to match the blood for that transfusion.  They also put an IV in at that time.  Reid has just about always had that put in the fold of one of his arms.  In the past, when we transfused on a Tuesday, we would do labs on a Saturday morning at a Children’s facility a little bit closer to home and then make a day of it with our family in that area, such as a family trip to the zoo.  Labs can be done up to 72 hours before a transfusion.  When we moved our transfusions to a Friday, we didn’t want Reid missing more school than he already does, so we just decided to do labs on the same day.  Labs on the same day make for a longer transfusion day, but haven’t turned out to be as difficult as we thought they might be.  Once labs are drawn, we wait for the blood to arrive.  Reid works on his homework if the transfusion day is a school day and he puts his lunch order in for the approximate time he wants it to arrive.  If it’s a non-school day, Reid might watch some tv, play some video games, or make some art projects in the commons/shared area of the MACC clinic.  There are even wonderful child-life staff and volunteers who come around asking if Reid would like to play a game or do a craft with them!  The staff and volunteers have become like family to us!  

Reid and his brothers

Once the blood arrives, two nurses ‘tag-team’ and get everything entered into the computer and get Reid hooked up.  Once the transfusion starts, Reid is hooked up to an IV pole, but can move fairly freely around the room or the commons area, except during flu season/this corona virus time when he needs to stay in his room unless using the bathroom.  Reid continues to work on his homework or play games, videos games, or do art.  His food comes for him and the parent with him either brings lunch from home or goes down to the cafeteria basement to get a lunch to bring back to the room.  Based on Reid’s weight, he currently receives 2 full units of blood.  His vitals are monitored and checked regularly by the staff.  When one unit is done, the second unit is attached fairly quickly thereafter.   Once the second unit is complete, Reid has his IV removed and is no longer attached to the IV pole.  He has a 30-minute wait period to watch for any sort of reaction. His vitals are then checked again and we are free to go home!   By this time, it is generally somewhere between 2:30-3:30 p.m. and we wait for our car and return home between 3:30 and 4:30 p.m.  As Reid gets older and continues to grow and gain weight, we realize that transfusions may need to be a bit closer together or the days may get a little longer because of increased blood volume. 

What should a prospective adoptive family considering adopting a child with thalassemia know?

Reid on Family Day!

Good insurance is definitely important for a family considering adopting a child with thalassemia and a prospective adoptive family should know that life with thalassemia is a marathon and not a sprint!  The hemoglobin and iron levels kids with thalassemia come home to their families with is the worst they will ever be at that moment.  It will and does get better with time and they will thrive with the love of a forever family, good nutrition, and optimal medical care.  It’s amazing to witness the changes in an adopted child with thalassemia over time and a true blessing to be the one they call mom or dad.  There is a terrific support network for families with children with thalassemia, from the Cooley’s Anemia Foundation who give $1,000 grants to families adopting transfusion dependent thal children, hold annual conferences for thal patients and their families, and who provide very helpful standards of care for thal patients to the ever-supportive and helpful thal families’ Facebook groups, where someone is always ready to answer questions you have and have your back!  You and your adopted child with thal will never feel alone!

Boys and children over 5 with a special need like thalassemia are at a unique disadvantage because the majority of prospective adoptive parents are hoping for a child 0-5, with minor needs, and because girls are preferred to boys.  There are often ten or less children with thalassemia who are paper-ready and waiting at any given time.  More families are stepping up to adopt children with thalassemia, which is awesome, but the boys and those who are older tend to wait and wait.  Right now, there are some amazing waiting kids (mostly boys) with beta thalassemia who are 7-13 years old.  They desperately need families. Often the biological families of these children desperately want to keep their children, but they cannot afford their medical care.  In many cases, families in China have abandoned these children with the hopes that they will be adopted and be able to live a longer and healthier life because of the medical care they cannot provide their child.  It is often a matter of life and death for these children and their lives will forever change once they are in a loving home and getting that medical care they so desperately needed.  Thriving with thal can be a real reality for these children!

Please note that Brooke is not a medical professional, and she is only sharing information about Thalassemia based on her own personal experiences. Please consult with a medical professional to discuss individual treatment options for you, your child, or any child with Thalassemia who you are considering adopting.

THANK YOU BROOKE for sharing your experience and encouraging others to consider adopting a child with Thalassemia!  

As Brooke mentioned, many children with transfusion dependent Thalassemia are waiting for a family!  Like Sutton, Peter, Duncan, and Bradley!

Sutton, 7
Peter, 5
Duncan, 11
Bradley, 11

In honor of World Thalassemia Day, Madison Adoption Associates is honored to provide a $1,000 grant to any family who commits to adopt a child with transfusion dependent Thalassemia by the end of May. This is in addition to MAA’s $1,500 Holding Hope grant that is available through May 31!

Interested in learning more about adopting a child with Thalassemia? Please complete our Prospective Adoptive Parent form and an Adoption Specialist will be in touch!

Not in a position to adopt right now? You can still help! Donations like yours help allow us to continue to provide grants to families!  Please consider donating today, so the waiting children can have a chance at a tomorrow.

And please remember, in honor of Reid, and all of the children worldwide who rely on blood transfusions for survival, consider donating blood! Contact your local American Red Cross to find out more information on how to do so!!

MAA Adoption Programs

Madison Adoption Associates currently offers international adoption programs in the countries of China, the Philippines, and Bulgaria. Our programs mostly focus on placing children who have special medical needs.
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