"Do it!"
There has been some talk lately on on what one needs to consider when adopting a child with thalassemia. I wanted to sit down and think long and hard about that.
How prepared was I when I saw Belle's picture for the first time and fell head over heels totally and unequivocally in love with her?
I did all my searching and learning AFTER we decided to adopt her. I Facebooked, I Googled, I Yahooed, I even Binged in an effort to educate myself. I called and emailed and texted to reach out to others who knew more than me. I lead with my heart and let everything else fall into place. I got lucky. I live an hour from an awesome Children's hospital and 6 hours from a Thalassemia Center.
For those of you who lead with your head and want to know how to be prepared I wanted to list some things out.
1. Where do you live? Do you have access to a decent hospital and hemetologist? Your doctor doesn't need to be a thal expert(it would be nice but unless you live in an urban area it's not likely). Having a doctor that is willing to do a little research and learn from those that are experts is awesome.(We have THE. BEST. PHYSICIAN'S ASSISTANT. EVER! He read the Standards of Care while on vacation. )
2. How willing are you to travel? It's a good idea to visit one of the Thalassemia Centers at least once a year. They are:
Children’s Healthcare of Atlanta
Atlanta, GA
The Children’s Hospital of Boston
Boston, Massachusetts
The Children’s Hospital of Los Angeles
Los Angeles, California
The Children’s Hospital of Oakland
Oakland, California
The Children’s Hospital of Philadelphia
Philadelphia, Pennsylvania
Children’s Memorial Hospital
Chicago, Illinois 60614
Weill Medical College of Cornell University
New York, New York 10021
That being said, you don't need to be near a big city . I have met family's at thalassemia conferences that lived in other parts of the country more rural than where I live and they make it work.
3. How's your insurance? My girls require blood transfusions every 3 weeks that includes blood tests, plus there in lots of yearly testing that needs to be done, not just blood tests but MRIs, eye exams, hearing test etc. After so many transfusions there is an unavoidable iron overload that has to be dealt with, that means a daily chelation medication. Suffice to say it is a very expensive medication. Insurance comes into play here in a big way. Some states have a chronic care insurance(Katie Beckett is a wide spread one). A little research would pay off in a big way. Pennsylvania has an awesome program.
4. How comfortable are you with medical things? This maybe should have been #1. But if you are considering a special needs adoption I'm assuming you have thought about this.
Personally, I am pretty comfortable. Hubby is working thru his aversions. My girls get stuck ALOT! Belle has a port, Betty-June does not so there are varying levels of sticks.
And it doesn't pay to be squeamish. If you are considering adopting, you are planning to be a parent so you know there will be different things you have to deal with along the lines of pottying but how do you feel about blood? Just let that sink in.
At Belle's last transfusion she fell asleep(as she sometimes does). And when she sleeps, she sweats. This particular time she sweat so much it dislodged the dressing around her port and she deaccessed it in her sleep, all the while the iv machine was pumping. Pumping. Pumping. When I noticed it her shirt was soaked. I called the nurse and picked Belle up. We took care of it, the nurse was able to reaccess the port, we got Belle changed and it was really no big deal. After the 'crisis' passed the nurse and I noticed I had blood all over my hands. I took a diaper wipe and wiped it off, then washed my hands with soap and water. The nurse commented on how calm I was. I told her,"We are putting that blood IN my kid, on my hands is no big deal."
5. Can you commit time? My girls go to Children's Hospital for a whole day every 3 weeks. At least. There are also other test that happen annually such as MRIs, EKGs, Echocardiograms, Opthomologist, Audiologist etc. But at least 1 whole day every 3 weeks. We get there between 9 and 10 the girls get accessed and have blood drawn for type and cross as well as other test. The blood gets there about 2 hours later and runs for 3 hours. Some, who live closer to their hospitals, get the blood draw a day or 2 before and the blood is waiting for them when they arrive an transfusion day thus eliminating several hours.
But those transfusion days, at least to me are not so bad. The girls and I snack, watch movies, play games, color and just have a grand old time. I don't have to worry about laundry, or cleaning or anything else except them. And on the way back to our small town from the big city we stop at the Asian grocery and load up on frozen dumplings, noodles, mild drink and other goodies.
5. Can you commit time? My girls go to Children's Hospital for a whole day every 3 weeks. At least. There are also other test that happen annually such as MRIs, EKGs, Echocardiograms, Opthomologist, Audiologist etc. But at least 1 whole day every 3 weeks. We get there between 9 and 10 the girls get accessed and have blood drawn for type and cross as well as other test. The blood gets there about 2 hours later and runs for 3 hours. Some, who live closer to their hospitals, get the blood draw a day or 2 before and the blood is waiting for them when they arrive an transfusion day thus eliminating several hours.
But those transfusion days, at least to me are not so bad. The girls and I snack, watch movies, play games, color and just have a grand old time. I don't have to worry about laundry, or cleaning or anything else except them. And on the way back to our small town from the big city we stop at the Asian grocery and load up on frozen dumplings, noodles, mild drink and other goodies.
6. Are you ready to deal with the variables? Kids coming home from other countries(in my experience China) will have had varying degrees and qualities of medical care. Belle was younger(19 months old) and appeared to have pretty good care. Betty-June was older(7 years old) and her care was not as good, plus she has a different form of Thal. Older kids coming home are going to be facing more significant iron overload. Also some of these older kids have varying levels of PTSD from their experiences.
7. How do you feel about research? You will be your child's best advocate. Knowlege is power.
8. Are you prepared to lose your heart? Because these kids will steal it.
Our family has found this special need managable. So much so we added another girl with thalassemia to our family.
This face spoke to us. Again we followed our heart and let things fall into place.
And if you do decide jump in with both feet and get PA for a thal child there is an awesome facebook group of moms(and dads) ready and willing to help. Contact me and I will hook you up!
If you decide to adopt a child with thalassemia there are lots of resources available. Cooley's Anemia Foundation is a tremendous resource. Eileen is the patient care coordinator that is really helpful finding a doctor or just getting you good info.
The facebook group to follow my girls Thal Life is Blood Sisters Belle and Betty-JuneAnd if you do decide jump in with both feet and get PA for a thal child there is an awesome facebook group of moms(and dads) ready and willing to help. Contact me and I will hook you up!
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