Our Journey with Thalassemia
First let me say this is not our story this is His story. If it was ours we would never know what thalassemia was nor would we ever have our precious kids.
My husband and I have always wanted a large family and to grow our family through adoption, but never felt we were ready. Frankly we felt intimidated and overwhelmed thinking about it. We both have family members through adoption and we always longed to grow our family this way too, but….(isn’t there always those “buts”?) we had four biological children, both of us had full-time careers, our savings account wasn’t overflowing, our house wasn’t big enough, and we just never saw how this could be possible. We left it as a far off dream but never thought it would be reality. It was a “someday” wish.
“Now faith is the assurance of things hoped for, the conviction of things not seen.” – Hebrews 11:1
When God whispers, listen. When God yells, put your excuses down and run in faith!
In the middle of some of our greatest stressors God has a plan and a purpose for us. I think in our times of deepest sorrow and discomfort is when we hear him most clearly. March 18, 2014 that was us. We had picked up the kids from school and made the hour drive to the hospital to visit my husband’s grandfather. This precious man was cherished by everyone who knew him, and he was having a biopsy on a brain tumor the next day. We all felt the magnitude of that impending procedure and resulting news weighing heavy on us.
As we drove down the interstate, our oldest daughter made an out-of-nowhere comment. She said if we were going to adopt we better do it soon, or she won’t get to know her sibling before leaving for college in two years. Well, that was random! I still don’t know what prompted her to say that other than God laying it on her heart. We giggled and said “someday.” Ha! Isn’t that the typical response for everything big and scary in our lives? We say God, surely not us right? That’s just not possible right now. How on Earth could we…? We already have so much going on…
As we pulled into the hospital and rounded the parking lot my phone dinged. At 5:52 my aunt shared a Facebook post to me of a little girl waiting in China through the special needs program. I tried to pull up the link as we walked into the hospital but the service was poor and totally gone once we got in the elevator. It would have to wait. How odd we thought! We were just talking about that and got that message out of the blue!
Clueless: adjective clue·less \ˈklü-ləs\ completely or hopelessly bewildered, unaware, ignorant, or foolish
The drive home was intense. We felt God in the car with us. Our concern for our Papa and this series of odd adoption-related events were elephants on our hearts. Even so, we decided it was all just coincidence and maybe we should talk more seriously about it…. someday.
Once home we laid down and like all tech addicted people, I pulled up my phone to open that link to the little girl again. This time it worked. As I read it aloud to my husband my heart skipped. At the bottom it said “for more information contact “Heidi Hawkins”! Guys… MY name is Heidi Hawkins! Um, what?
We decided that was a crazy “coincidence”, but we had no clue how to even start. We decided to table it. End of story for now until someday when we had our savings all ready, when we had a bigger house, when…. when…. when. Then as if giving God a consolation prize, we decided that maybe we should follow that Facebook page my aunt knows well, the one that supports orphans with special needs. I said I would in the morning.
At 9:26 AM on March 19, 2014 I clicked “like” on that page. As the page loaded a little face appeared and underneath it read, “Here is baby Heidi with her nanny.” My husband and I looked at each other with big eyes and said, “I think it’s time.” God was not settling for consolation prizes! Go for gold! He had to yell it a little louder for my thick head and clogged ears it seems, but we got the message! I made the call and asked how to get started.
We signed with an agency and I started searching for blogs of families who had adopted from China’s special needs program. I found a few that were awesome. I read about their beautiful families and swooned over their precious photos. We also have cousins adopted from China and our family was a tremendous support. We started completing the initial paperwork, finding a home study agency and all the other lovely to-dos.
One of those things was filling out a medical checklist. This list contains all sorts of disabilities and disorders that children could possibly have. One thing on that list we had no clue about, something called thalassemia. What in the world was thalassemia?! We spoke with our local doctor about it and got a brief explanation. It is a genetic disorder causing the body to not be able to make fully developed red blood cells.
We searched the internet finding a mixed bag of help. We came across a few videos and blogs with great information though. It seemed like it might be something we could handle. The more we researched, we learned there were several forms of thalassemia with varying forms of presentation.
The most severe form was Beta Major Thalassemia. We struggled with the fact that children with the most severe form of thalassemia needed regular blood transfusions for life and a daily medicine called a chelator to get rid of excess iron that builds up in their organs over time due to chronic transfusions. Needles, blood, and the need for something injected in order to live sounded scary!
Then it hit me. My father has juvenile diabetes. I grew up watching him take shots, monitor everything he ate and put in his body. He now had a pump that he wore all the time to inject his insulin that he needed to live because his body can’t make it. Needles, blood tests, the need for something injected in order for him to live, his body can’t make something it absolutely needs… sound familiar? Wow. I thought nothing of his disorder, it was just part of our life. My dad was just my dad not my diabetic dad. How was this thing called thalassemia any different? If anything it sounded easier to manage daily. We checked the box.
July 3, 2014
I had a direct sales party that evening as my part time job to earn extra money for the adoption fees. I had started a group on Facebook for the group of ladies I was meeting that night. I accidentally made the group public instead of private. I shared a video to the group of a gotcha day moment I found on youtube as a way of explaining the adoption and that glorious moment when your child is put in your arms. My friend and director for my direct sale business saw the video (total accident – or was it?) and suggested I meet another stylist also on our team who adopted from China and used her business to raise money for the fees. Once we were friends on Facebook my new friend, also a stylist with my business, noticed the video I had just shared was actually a friend of hers from her former neighborhood in another state! A random video found on youtube by me and accidentally posted publicly to FB was actually this girl’s friend.
My new friend added me to a group on Facebook where advocates often share information on waiting children. She added me at 2:09 PM on July 3, 2014. I saw my daughter’s face within hours.
By 4:00 PM I was showing her face to my husband.
July 7, 2014
“Say a prayer for us! Pursuing with no idea if she is to be ours but reaching out anyway trusting God will move mountains if she is, and if not we will have peace about that as well.”
That was my Facebook post. We had called and emailed about her and learned several families were interested. This little girl has beta major thalassemia, the most severe form. We answered some questions about thalassemia and sent in our form and waited. She was listed with another agency. We had no idea what that part meant for us, but we left it all to God. I had printed off her file from the agency’s website and had gripped it so tightly it was curled. I had shown it to my parents and sat gushing over her with them all day.
The agency told me they would let me know if we got her file since others were interested. I waited. I prayed this prayer: “Dear Lord, if she is to be ours please bless this journey and if not please God give us peace to accept it.” I left my parents and went home to my husband. I told him what the agency said and as I finished telling him my phone range. It was the agency telling us she was ours.
July 9, 2014
“We sent our Letter of Intent yesterday. Thank you all for your prayers, keep them coming!! We are pretty sure God gave us our daughter on July 7, 2014 but until China agrees we wait… (think first trimester pregnancy).”
She was ours! We spent the rest of our process researching and reading everything we could find about thalassemia. Once we had secured a pre-approval (PA) from China we were added to a support group on Facebook with other parents of children adopted with thalassemia. As I scrolled through the group I started to recognize their names and some of their families! They were some of the same families whose blogs I had followed!
That FB group was and is the most valuable resource we have. It is full of wise parents with years of experience, ready to walk you through the journey beginning to end.
They warned that due to the lack of transfusions and medicine available to the children in orphanages that our child may be at a critically low hemoglobin when we got her. Also they told us that the first few months home would be hard and exhausting with more appointments. Many children in the orphanages did not make it with thalassemia due to blood shortages and the sheer cost of treatments. We already knew from her file that her levels were not being kept up to where they sound be. That kind of chronic low and lack of access to medication can negatively impact growth, bone structure, organ functioning, and more. It can easily be critical since the little ones can drop so low it can cause cardiac arrest.
They advised us to set up an appointment with a hematologist as soon as we were home. We followed their advice. In addition, we contacted Cooley’s Anemia Foundation to find a list of thalassemia clinics where we could also take her to ensure she got the best possible care and secured an appointment with one.
There’s No Place Like Home
As soon as we got home with our baby girl the road to health began. It is a marathon and not a sprint as one wise momma explained it. She was right. I had spent so many sleepless nights during the adoption process reading every lab suggestion, chelation medicine option and procedures, specialist recommendations, etc. that I felt totally overwhelmed. In hindsight, I shouldn’t have tried to learn everything and worried about it all at once. A marathon requires a steady pace but attempting to accomplish it all at once will just lead to failure and exhaustion.
With that mindset, we focused on the most immediate needs and worked from there. She had her first appointment with the local pediatric oncologist/hematologist where we discussed treatment plans and ran some initial labs. They gushed over her cuteness and drew blood to check her hemoglobin, organ functioning tests, and match her blood in case she needed red blood cells. They were wonderful.
Finding a specialist who understands thalassemia and the current research and standards of care though is hard for such a rare disorder. Our local clinic and our family were new to thalassemia. Due to this, while we use a local hematologist for regular care, we also set an appointment at a thalassemia clinic that was within driving distance for us. We had chatted with the clinic via phone and email during the adoption process and found them to be extremely helpful explaining thalassemia.
It was a struggle initially getting our daughter up to a healthy hemoglobin and figuring out when she needed to be transfused. Our local hematologist was helpful, but we were all shooting a little in the dark trying to catch her hemoglobin to determine when to transfuse. Thankfully, once we had our appointment at the thalassemia clinic, we got sound advice on how to maintain hemoglobin levels, chelate her properly to rid her body of the excess iron from all those transfusions. We also determined which labs we needed to make sure we did annually and monthly to ensure her body was not showing negative impact from either thalassemia or the chelation medicine.
We learned that nearly all children with beta major thalassemia will need to be transfused every three to four weeks, but at first they may need it more frequently if they have endured time without getting adequate transfusions and bee allowed to drop too low in their hemoglobin. We also learned that allowing them to drop too low in hemoglobin actually resulted in more iron storage because the body tries to hold onto the iron more as a result of being so anemic. Awesome!
Now we had a plan of how to balance keeping their red blood cells stocked and getting rid of the excess iron. We would check her levels every three weeks, and we now had a definite number to set as our goal to transfuse at to make sure she did not drop below it.
If all these labs sound traumatic, they were! Our girl’s veins were awful! Scarred and tiny and non-existent. I am pretty sure every nurse had panic attacks when they saw us bringing her in. Her veins had garnered a reputation. Her veins were nearly impossible to access for the transfusions and after a horrible day of many, many sticks and blown veins that left her unable to receive her blood that she so badly needed, we scheduled for a port-a-cath to be placed. The surgery was pretty uneventful. She was nauseous in recovery but went home the same day.
Having her port allows easy access on transfusion day without the trauma or stress of multiple sticks. We can put cream on it prior to arrival that numbs it, one stick and it’s done. The negative to having the port is any time she runs a fever we need to take her into the hospital to have her port line checked for infection. This is because the port runs to her heart and a risk of infection cannot be taken lightly. Thankfully this has only happened a handful of times and each time it was due to a virus not an infection in her line. Overall, reducing medical trauma was an important factor in our decision for her port placement surgery. She had suffered enough trauma being in hospitals alone and enduring multiple sticks into scarred little veins. Now we had stress free transfusion days for our girl and us!
With the port placed and routine transfusion schedule going, we were smooth sailing! We also saw a few specialists to get baselines before starting her chelation medicine. This included a cardiologist where we learned she had a significant murmur, but nothing we had to worry about, an audiologist who said our girl could hear everything just fine, and an ophthalmologist who said she could see everything without limitations. Sweet! With the all clear we started her chelation medication, a daily tablet dissolved in her morning juice. Easy peasy. We were in our comfort zone again. She was even holding her hemoglobin four weeks, not three so we only had monthly transfusions. We thank God for carrying us through that turbulent time!
His grace is Multiplied
The comfort zone is not where God wants us. He wants to stretch us to our fullest potential. I am so thankful for that! Our life would be so mediocre if we were in control.
We were home six months when our agency emailed us with our son’s file. Our other boys had begged for a little brother. We weren’t opposed to it, just in no rush. A reuse of our dossier was tempting for sure. That paperwork was a beast that I had no desire to slay ever again!
We are so slow to learn though so we told our little guys “Someday… when the time is right… when God tells us…” HA! Sound familiar? Our youngest son bowed his head and prayed that instant that God would send us a son. He sure had some faith as his momma and daddy grinned at his little innocent heart and giggled to ourselves, how sweet. Since our homestudy was going to expire, we decided we would update it just in case.
As it turns out fear based-decision-making is not suggested but fear of redoing paperwork IS a motivator. We sat at the table with our social worker and discussed age. We said we thought up to five since our youngest biological child was five that seemed like a good fit. We also told her a boy was preferred by our little guys but either was fine and thalassemia was definitely a go.
The week after that meeting we got the email. A little boy. Beta Major Thalassemia. Five years old. Same orphanage as our daughter. WHAT?! Reading you loud and clear my Lord. Let’s go. Our daughter was doing great. We had a good routine for her care, and we felt confident understanding the needs of thalassemia.
We knew the first few months would be crazy as it was with our sweet girl. All the initial labs, specialists to get baselines, attachment, trauma, language barriers, jet lag, and more would make for a stressful few months, but seeing our daughter thriving and easily settled into our new routine we knew we could do this. If not, God had our backs.
Our family of seven flew to China and came home with number eight on November 21, 2015.
So what does daily life look like as a family of eight with two parents who work full time outside the home and two littles with thalassemia? I would say pretty much your typical crazy fun which comes with that dynamic with the occasional medical appointment and daily doses of medicine. Annually at the thalassemia clinic we see these specialists: cardiologist, audiologist, ophthalmologist, plus run some special labs each year. Those labs are run at our usual transfusion appointments so they are not an additional appointment. While we are at the thalassemia clinic, we have an MRI run to get the most accurate measure of the iron that is in their organs that we still need to chelate out.
The awesome part is seeing the damage from no care reversed and iron reduced! At our cardiologist appointment this year we learned our daughter’s murmur is now barely detectable! The chronic anemia was doing damage before and now her little heart was thumping along pretty normal!
Aside from those annuals, our regular routine consists of labs every 4th Wednesday to get the kids blood matched closely and check their hemoglobin. Our lab is open 24 hours. If my husband is off from work, he takes them mid-day. If he worked that day then he goes later, or I go when I get off from work. The lab draw takes about 20-30 minutes to do both kids. We go home and our hematologist calls us with the results and to confirm the transfusion appointments for later in the week. The hemoglobin level determines how much blood will be ordered. Then on that 4th Friday, the kids are transfused. My husband takes them most of the time, however if I have sick leave days available I take them sometimes as well. It all depends who is off work or can get off work. We drop our other kids off at school around 8:00 AM and head to the hematology/oncology clinic. We arrive around 9:00, and they check height, weight, vitals, and access their ports to pull blood for initial labs.
At every transfusion we check things like liver and kidney functioning to make sure they are handling their chelation medicine well since it can cause some serious issues. We also check the iron level through a blood test to see if it is trending down to make sure that chelation medicine is doing its job. Its “job” is getting rid of the excess iron in their organs that built up from all those transfusions they got before us when they did not have access to chelation medicine.
Once they get those done the nurse brings in the blood and hooks the kids up, usually tandem style for a while so she can closely monitor those first minutes. During the transfusion vitals are checked throughout to make sure they do not have an allergic reaction to the blood. Their blood is closely matched so it is not common, but an allergic reaction can happen. The transfusions usually take around four hours on average.
During that time we watch movies, read books, play games, color, and make silly faces for selfies. Our daughter knows when the machine beeps that she is done and will tell you so. She even hits the nurse call button to let her know sometimes, too. It is amazing to see her so young taking the initiative in her own healthcare! We also use our time there to chart all the lab results so we can watch for any trends or increases. This also helps us when we visit the thalassemia clinic annually to have a one page picture of how they are doing.
Each day we give the kids their chelation medicine. There are a few options for chelation. One that is pretty popular is a tablet that dissolves in liquid. Every morning we get up and pop a tablet in their cups with some juice and have them drink up! Then we do it again in the evening to split the dose across the day. Thankfully our kids have no problems taking it. Our daughter’s liver function test results went crazy once during the summer, but after taking a break from the medicine and restarting she is staying steady with those same results and now back on a higher dose.
I think it’s important to explain the stressful impacts of this disorder in addition to the rainbows. You know rainbows are the most beautiful after a storm anyway…
– One of the stressors of this disorder is making sure you have quality care and a physician that understands it or is willing to learn about it with you. Having the support of both a wonderful local clinic and an extremely experienced thalassemia clinic has made a huge difference.
– Insurance can also be a source of stress. Investigating how much is covered on your plan will be an important factor to consider for potential families. Things like how much will transfusions and labs cost are important to look at.
– Children with thalassemia need to drink a lot of water due to the chelation impact on kidneys. Making sure our kids are drinking has not been an issue since both are always drinking water. But it is something to keep in mind once they start school.
– Children with thalassemia can also become fatigued when it is nearing time for transfusion. Imagine being very anemic. Our littles tend to nap longer when it is close to transfusion time and sleep later in the mornings.
– Our son’s growth also seems to be impacted due to the lack of adequate care he received while in the orphanage. He is extremely small for his age, so much so we are not sure his age is accurate. This is something we are still working on with upcoming appointments for an endocrinologist.
– Both children also have extreme iron overload due to the lack of chelation while in the orphanage. This is improving though and will continue to improve as long as we are chelating properly.
Our two are little firecrackers. They are not limited in any way by their thalassemia and most who meet them never know they have a disorder. Their energy is high (too high at times) and their giggles are infectious. They do everything other little ones do… stuff too much toilet paper in the potty, color everything on their sister’s dresser with nail polish, and pull out every book on the shelves daily. They keep us on our toes but not because of thalassemia. They have become very attached to each other and our only must-have item for appointments has been a double stroller to contain them since wrangling feral cats is easier than keeping up with two preschoolers! They love playing with their older siblings and have become incredibly attached to them. There is a lot of love going on in our home!
Looking back on our journey from having no clue what thalassemia was to now parenting two children with the most severe form I can tell you it is not scary or intimidating at all! Our savings account never was adequate but God made it happen. We are still in our small home, but it feels more full – not due to bodies, but because of all the love in it. It makes me wonder too if I had not been exposed to diabetes, something that impacts so many families, would I have said yes or been able to see thalassemia in perspective? I don’t know.
Thankfully God has always had a plan for us and his perfect details always seem to come together in the most incredible ways. So often we are scared of the unknown. Fear guides our decisions. When we let faith overcome our fear then we can see His plans for our story and His glory.
I am a different person because of our precious little thal babies and I am so glad! I have felt God’s presence, heard Him speak to me directly, walked in faith with Him, and seen his grace and glory firsthand. I have a new perspective on life and purpose.
“Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.
I hope you dance…
I hope you dance.”
– Lee Ann Womack
I hope this piece helps shed light on thalassemia for someone else who may, like us, be fearing the unknown, the unfamiliar sounding name, the blood transfusions. I hope you see the beauty of these children and the joy they bring to us. I hope you choose to dance.
– guest post by Heidi