Sofia had asked me to come and visit, as no one from the hemophilia community has been here before (that I know of). She is interested in starting a hemophilia society. We got acquainted a bit and Zoraida eventually strolled out of the arrivals gate, unmistakable with her big bright pink suitcase. We hold Aaron’s hand-- he is a live wire--and go to the parking lot, stuff the suitcases in and drive to the Marriott, not too far away. I am nursing a very sore throat, which I think I got from the AC system at Dennis’s Hideaway. Sofia drove us to the Marriott, and we said our goodbyes. This gave Zoraida and I a chance to relax after a long day.
Monday February 10, 2014
We had a leisurely morning, breakfast downstairs and then waiting for Sofia. And waited. Island culture—island time. Things will happen when they happen!
When she arrived, we had a chat. She explained about how she learned Aaron had hemophilia: He was 9.8 lbs at birth, seemingly normal. At 9 months he began crying all the time, and his knee was swollen. She took him to Dr. Inniss, her pediatrician, who sent her to the Queen Elizabeth Hospital (QEH), the only public hospital on the island. The doctors didn’t know what was wrong. They admitted him and did a biopsy on the knee! And they did an x-ray but never saw a bleed. The knee was traumatized but eventually the bleeding stopped and went down by itself.
In 2009 Sofia went to New York for a vacation, as a relative is there. Aaron had had a fever. As the plane was landing Aaron cried and cried, inconsolable. No one knew but he was having a spontaneous head bleed. They took Aaron to Long Island Jewish Hospital, a good HTC, and Dr. Richard Lipton helped determine this was a cranial bleed. They ordered a CT scan. She said they told her, another 15 minutes and the damage might have been irreparable. Now they realized he had hemophilia. Her cousin finally told her that her dad and both uncles had it! Aaron stayed at LIJH for 6 months, and received factor. And there seems to be no permanent damage, thankfully.
Sofia explained how hemophilia is treated. Here in Barbados, everyone gets free factor. But I questioned what exactly does that mean? An unlimited supply? No. It means that the government buys a certain amount for the year, and whatever is there, you can use and don’t get charged for. But inevitably it's not enough and gets used quickly. Zoriada noted this is why a few patients had recently contacted us for a donation.
Sofia also mentioned Aaron's dosage, 1700 IU for a 4 year old, three times a week. This dosage seemed excessive.
We then drove to meet with Dr. Patricia Inniss, Aaron’s pediatrician. We waited about an hour and a half in her waiting room. It seems our day is filled with waiting, waiting. No lunch. My throat got worse as the day went on. It was hard to maintain a conversation as I could hardly speak
Finally we were let in. Dr. Innis is a lovely woman, graceful and civil. We gave her our toddler books about hemophilia, and asked her about Aaron, and the state of hemophilia on the island. I asked Dr. Inniss about Aaron’s prescription; why a 4 year old is be given 1700 IU, enough for a teenager. She wasn’t sure. So we talked about lowering his dose.
After that we drove to meet with Ms. Maryam Hinds, director of Drug Services of Barbados. Gentle, articulate, devoted. We had a nice chat. She showed me the drug formularies, the tender and explained how factor was procured. According to her, they spend only enough money for 75,000 IU of factor VIII, much less than what one American child uses in one year! But at least Barbados is buying some. Many countries that have much more money than Barbados don't even buy factor.
|Queen Elizabeth Hospital|
Tuesday February 11. My voice is gone and I can only whisper now, which is unfortunate as we meet with hospital doctors today. Today's meetings warrant a dress, and Sofia drives us to meet the hematology staff at the Queen Elizabeth Hospital (QEH). The hospital is your basic, underfunded public hospital in a developing country, yet it buys factor, which is astounding. We go to hematology and meet with Dr. Laurent, Dr. Hawkins (originally from England) and a student. Laurent accepted our donation of factor, looked into the bag, passed over any thank you to sadly ask, “No NovoSeven?” Which I guess shows the state of desperation here.
She painted a picture of hemophilia on the island. One patient is a fisherman, and he was forever getting cut with hooks, cleaning knives, etc. They asked him to think about getting another job perhaps? They also mention the “poor whites,” on the other side of the island. This raised our eyebrows as being a politically incorrect thing to say, but yes, this is a real term used here.
The "poor whites" are descendants of an estimated 50,000 white slaves transported from Ireland to Barbados between 1652 and 1657. I read on line "Having succeeded in recruiting Irish men to die in the services of France, Spain, Poland and Italy, Cromwell turned his attention to others – men and women press-ganged by soldiers, taken to Cork and shipped to Bristol where they were sold as slaves and transported to Barbados." They are now called “poor whites,” or Red Legs or Red Shanks. They live in St. John parish and no one knows much about them except they have hemophilia among them; they tend to intermarry and not mingle with the blacks. I thought that would make for a very interesting visit my next time around.
After our meeting, we went with Sofia to the pharmacy and waited till her number was called. She received quite a few boxes of FVIII. More concerning was that Aaron gets an allergic reaction to each infusion of these. I told her that her hematologist needs to let the manufacturer know.
We then drove a long way round the island to visit Dr. Chris Nicholls, her hematologist. He’s a nice guy. Young, responsive, communicative, smiling. When I carefully broached the subject of Aaron’s dosage, he agreed that we needed to look into this. When I carefully broached the subject of Aaron’s allergic reaction, he was also in agreement that the manufacturer needed to be contacted. It's great to find a doctor so agreeable and open-minded. He lamented that no medical records here are kept digitally; all records are kept on paper! He studied in the UK and just returned not even four years ago here. He works in the QEH but also has his own practice. We asked if he might be interested in forming a nonprofit with Sofia, and he agreed.
|Mel with Sofia: Outreach to other families|
Last, we drove some more to visit a mother—Melanie. Sofia told us she runs a “shop,” and I pictured a little boutique. Not even close; it was a roadside stand, the kind covered with tarp that sells chips and drinks. Mel's little son Remel fought desperately to hide from me though it was more like a game. Nothing we did could entice him to stay still for a picture. This led to an instant bonding which was good. We all laughed at ourselves trying to get Remel to be still. Finally I tricked him and as he turned the corner, caught him in a great shot. I jumped in the air and pumped my fist, and the mom, and the neighbors sitting and watching all applauded! It was great.
Melanie told us that she has nephews with hemophilia in Guyana. I said we knew two brothers, Laurence and Lloyd… and she said that is them! What a small world! We’ve been helping her nephews for a long time. Another bonding moment.
February 12, Wednesday evening. Sofia invited local families with hemophilia to meet us at our hotel for dinner. We were surprised at how many came, including two in wheelchairs—Jeffrey and Leemar, who we both sent factor to recently.
|Dinner with Barbadian families|
The origin of the name Barbados? The name is Portuguese. The reference of the Portuguese to the island as Los Barbados (the bearded ones) is believed to describe the bearded fig trees on the island.