Mother Shares Progress of Son With Sickle Cell Disease
Sickle cell disease care partner Carla Lewis shares details about her son’s journey including what they encountered with support, helpful treatments, and how treatments have evolved over the years – while Maya Bloomberg shares advice for families with sickle cell trait.
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In this program:
Sickle cell disease care partner Carla Lewis has been through the lifetime journey with her son. Carla shares details about his journey including what they encountered with support, helpful treatments, and how treatments have evolved over the years – while hematology nurse practitioner Maya Bloomberg shares advice for families with sickle cell trait.
Transcript
Interviewer:
Carla, so when your son was born with sickle cell disease, that came as a bit of a shock to you and your family, and unfortunately, we really realized that gaining access to the right resources just wasn't always easy. Can you share with us a little bit about you and your son's journey, and tell us, how is he doing today?
Carla Lewis:
My son was born in 2002, so pretty much just connecting to his hematologist was the greatest resource they could have probably gave me, and then I had a family care doctor that was just...have to say God-sent, that was very, very...just involved in his care, just having the diagnosis of sickle cell, I know I need to be educated more about the disease itself. For me, I knew I had the trait, didn't know much about the trait at the time, but I knew that my mom was a registered nurse. And I knew that at the age of 16...I asked her just because we went to an appointment. And she basically said to my sis...the doctor that my sister doesn't have sickle cell, but she has the trait. So that kind of prompted me, that was actually at age 12 that prompted me to ask her, “So what's the trait thing?” Because we're from the Caribbean...she basically did not go into telling us much about...telling me much about the trait, because we would ask more of the leading questions myself. And so I just did a little bit of research. But when my son was actually born, the doctor was very open to answer any questions that I had, and that was his physician, his hematologist as well as the family care doctor.
It was not easy for me, because I wanted to connect to families, that's the first thing that I said, “Where are the families? So how do I connect to those adults, young adult patients that I can also talk to about how they have progressed with this disease?” And when the doctor said, “There is no connection with adults.” There was no support group here in Orlando, that's what I realized. And then when I asked them, “So where the...how do I attend sessions or conferences?” He said, “They're very limited.” And he gave me the resource, sickle cell info and I'll never forget that. That was the greatest resource, I pretty much studied that website, was able to find The National Sickle Cell Association of America, which is another resource. And that's where I started to make connections. When the hematologist also told me that they are limited with having also funding in order to get sent out for updates on this particular disease, that's when I realized something needed to happen here in Orlando. My son is now 19 years old, he was born with sickle cell beta-thalassemia. And from the newborn screening, he was diagnosed, he's progressed pretty well, he had some challenges, there were some tough times.
I can definitely say he was all for a period time noted as being non-symptomatic until the age of 6, he started having crisis, which was pretty mild, we handled it with acetaminophen (Tylenol) and ibuprofen (Motrin), and it's always in one place, his lower back. Then at the age of 12, that's when sickle disease pretty much said to us, “We're here.” And it really became very tough for him during that time, he was hospitalized very frequently from the 5th grade and went on to middle school. On the first, they have middle school was when they called me to take him to come and get him. He went into a severe crisis that pretty much led him to be hospitalized. And at that point, I had to make the decision that 5th grade was hard enough, the ending of 6th grade, 5th grade for him and I had to make the decision of doing the hospital home-bound program. So we pretty much did that program, and it worked out pretty well for him. He had a teacher that came out to our home, and it was his 5th grade teacher that recommended it...one of the awesome things that I had, his 5th grade teacher really made a great impact in his life. She made sure I sent him down to the nurse when he wasn't feeling well, when he made sure he had water on his desk, and she reminded him.
She connected him with a student that had diabetes, there was no other child in that school that had sickle cell, so she did connect him with someone. So he had to walk the student down in the morning for her to go to the nurse. And so they made the connection. So that even that first day of middle school, that was a child that said he's not feeling well and took him down to the nurse. So just having the resources of friendship and having a supportive teacher, that teacher told me that she would sit with him, so I can get a break, and that made all the difference in the world to me. Now, Shamar was able to actually go back to school in 8th grade, because new medications actually helped him have less crises, and he actually went that year crisis-free and went to 8th grade. So he was also very open with me and telling me he wanted to be in school with his peers. One thing that touched my heart is when he came to me one day, while in...when he first was starting to have a tough time and being home, he said, “I'm not living my life.” And I thought to myself, a 12-year-old can say to you, “I'm not living my life,” and that pretty much put tears in my eyes. But I realized I needed to do more, even adjusting my time, we started advocacy, taking him with me, going to Capitol Hill, and I would tell him, “You have to talk, you have to tell them about your experience.”
And that kind of helped him understand his self-worth, even at the age of 12. Now we had a champion moment when Shamar was able to go back to school with his peers and finished 8th grade in school, we celebrated with dinner, had friends over to celebrate and that was a great milestone. You would think that was the graduation, but he did complete...with a 2021 graduate this year, it was a huge for us, especially because he's...his health has progressed pretty well with these new medications. But prior to graduation, the three weeks Shamar was in the hospital, pretty much back to back, and we weren’t sure if sickle cell was now getting more aggressive back again. But pretty much he had an infection that he was pretty much fighting, and he did well and was able to bounce back before graduation that week before graduation. So we were ecstatic that he graduated, and he also completed the EMS program...actually, he wanted to complete the EMS program. But he did an EKG program in high school, which he completed, and now he is now attending the Valencia College enrolled to be a radiology tech. So we are proud of Shamar. He wants to go back in the field to help others, and I was pretty shocked that he wanted to do radiology, because he never really liked going for CT scans and MRIs. He really gave me a hard time on that, but this is what he said to me that he definitely wants to be able to help other children, especially that he knows young adults like himself, he loves to network with young adults and being able to tell his story, being able to relate. So that was helpful.
Interviewer:
Maya, as a nurse practitioner is what Carla shared with you resonate from what you learned from your patients?
Maya Bloomberg, APRN:
First thing that I thought which is so common is that so many of my patients, their parents had no idea what sickle cell was by the time they had their first child with sickle cell.
We have the mandatory newborn screening, which now will pick up patients with sickle cell disease and sickle cell trait, which is great, but I wish we could take it a step further because it's great for earlier identification and diagnosis for those with the disease, but say you have somebody who has multiple kids and their finding that they have sickle cell trait, unless you're really on top of that, you might not know by the time you're really family planning that you have trait and that can have implications, and especially for your son with sickle beta-thalassemia, your husband could have gotten the sickle cell screen and tested negative, you could have had the sickle screen and tested positive. And to realize that you have the possibility of having a child with sickle beta-thalassemia. So I think we need to take our newborn screening a step further and a little bit more on education and sickle beta-thalassemia because the newborn screening alone isn't going to touch on that.
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