I came back from HFA’s 2018 Symposium pumped. “Together We Rock” was an experience that left me much better equipped to face the many challenges of having a child with a bleeding disorder. Most of all I met other moms that go through similar situations with their own children; some were even from Puerto Rico as well! We exchanged contact info and sure enough I was calling them within the month. How did they go about getting expensive and hard to find medications? Did they use any special medical insurance? How did they apply for it? Their answers were helpful, but the fact that they came from a place of personal understanding is priceless. If time goes by and we haven’t spoken, it’s usually good news because that means there hasn’t been a significant health event. When we speak again, there is a profound connection that one only shares with these anonymous heroes of every day struggles.
My lovely daughter, Fabiola, is 7 years old. She loves princesses, unicorns and anything pink. She makes the point of clarifying that it is no longer pale pink that she likes, but a darker shade of the color because she is bigger now. She has been diagnosed with parahemophilia or the deficiency of factor five in the blood. This is a rare bleeding disorder that severely affects clotting, especially at the level of soft tissues. The condition mostly targets her oral and nasal regions, as well as joints when there is trauma. Fortunately, she has not had spontaneous bleeding that we have noted. Factor five is not available in pharmaceutical form, so we end up having to get fresh frozen plasma (ffp) transfusions instead in order to stop severe bleeding. Milder events can be addressed with some medications.
Besides this, she also has mild cerebral palsy, which has required us to provide her with multiple therapies. In 2016 my husband and I, along with some musician and artist friends, offered a concert to raise funds for therapeutic equipment that she wears on her left leg which helps her muscles gain tone and flexibility, allowing her to have a more fluid walking pattern. We actually have this concert on DVD format for sale in order to continue raising funds to make our yearly appointment in Miami for follow-ups. Since we are professional musicians ourselves, we plan to continue offering concerts, so that we can help with general medical costs for our daughter, as well as other kids in similar situations in Puerto Rico.
It is almost funny how we go through such difficult times with our kid’s health and then when we encounter a milder turn in life’s road, we become apprehensive and doubtful. In my daughter’s short life, she has gone through about eight transfusions and at least three hospitalizations. Normal stepping stones in a child’s life take on new meaning. For example, getting a bike. Despite the many benefits of riding bicycles, we have opted not to buy a bike because we think the risks of injuries involved are too high considering her equilibrium is thrown off by the comparative weakness on her left side due to CP. To this we consider that our street is open to general transit and also, having to bear the expense of a bigger or special bike with adapted training wheels, because she has always been taller for her age. She has ridden tricycles and borrowed bikes on occasion with the close help of her dad.
Now, my husband and I have come to the juncture where we are thinking of getting her a puppy. I’m a guide dog user and my dog is also a pet when we are home, but the experience is different for my daughter because I have to be its primary care taker. We lost my first guide, who was retired and living with us as a pet in May last year not too long after coming back from Symposium. This loss left a huge void in our family and Fabiola cried profusely when we had to tell her that Peace had gone to doggie heaven. The loss made us consider the idea of getting another pet dog more seriously.
Still I’m wondering if it was not my husband who primarily wanted a new pet dog, but here we were (or I was, because he was convinced to get one) weighing the pros and cons. Would a puppy’s pointy teeth and claws scratch her and cause her to bleed? Would it bite her face or nose, like a pet dog did mine? I have mostly dealt with trained adult dogs and I wasn’t sure how to handle it. I started calling my HFA mom friends and even our hematologist. They gave me much support and ideas on how I could protect her; long sleeves and pants, getting professional training for the dog, etc. None of them had had anything major happen because of a pet dog. The truth was that I was terrified. How could I potentially put her in harm’s way? Of course, I wasn’t thinking of the positive things a puppy could mean for her; like laughter, love, and a broader sense of responsibility. Not to mention, staying away from technology for at least some periods of time.
Do our children’s diagnoses make us fatalist? Many times I think they do for me, although having a limiting condition myself, has made me more aware of the difficulties in life; always hoping for the best, but preparing for the worst. In my case, it has been that fear of losing the little eyesight I have left. That constant fear of a horrible accident or event becomes the elephant in the room. Everybody thinks about it and doesn’t dare mention it. As moms we drive those fears out in order to stay strong for our children, but it is still a daily truth we face.
How can we keep a balance between being prepared and not freaking out over stuff? It’s a hard question, but I believe knowledge about the conditions and strategic planning are two important parts of the solution. Scrapes and scratches have not typically been a problem for my daughter. Still, I have to be very mindful of the dog’s behavior and most probably get him training.
Sylvia lives in Puerto Rico with her, Javier, and daughter, Fabiola.Â
Infusing Love: Decisiones y Aprehensiones
Regresé del simposio de HFA 2018 fascinada. “Together We Rock” fue una experiencia que me dejó mucho mejor equipada para enfrentar los muchos desafÃos de tener una hija con un trastorno de sangrado. Más que nada, conocà a otras mamás que pasan por situaciones similares con sus propios hijos e hijas, ¡Algunas de ellas también eran de Puerto Rico! Intercambiamos información de contacto y, efectivamente, las estaba llamando dentro del mes. ¿Cómo se pusieron de costosos y difÃciles de encontrar los medicamentos? ¿Usaron algún seguro médico especial? ¿Cómo lo solicitaron? Sus respuestas fueron útiles, pero el hecho de que provengan de un lugar personal no tiene precio. Si pasa el tiempo y no hemos hablado, generalmente son buenas noticias porque eso significa que no ha habido un evento de salud significativo. Cuando volvemos a hablar, hay una conexión profunda que uno solo comparte con estos héroes anónimos de las luchas diarias.
Mi encantadora hija, Fabiola, tiene siete años. Le encantan las princesas, los unicornios y todo lo rosado. Ella aclara que ya no le gusta el color rosa pálido, sino un tono más oscuro porque ahora ella es más grande. A ella le han diagnosticado parahemofilia o la deficiencia del factor cinco IV en la sangre. Este es un trastorno de sangrado poco frecuente que afecta gravemente la coagulación, especialmente a nivel de los tejidos blandos. La condición se dirige principalmente a sus regiones orales y nasales, asà como a las articulaciones cuando hay trauma. Afortunadamente, ella no ha tenido sangrado espontáneo como hemos notado. El factor cinco no está disponible en forma farmacéutica, por lo que terminamos teniendo que recibir transfusiones de plasma fresco congelado (ffp) para detener el sangrado severo. Los eventos más leves se pueden abordar con algunos medicamentos.
Además de esto, también tiene una leve parálisis cerebral, lo que nos ha requerido proporcionarle múltiples terapias. En 2016, mi esposo y yo, junto con algunos músicos y amigos artistas, ofrecimos un concierto para recaudar fondos para el equipo terapéutico que usa en su pierna izquierda, lo que ayuda a que sus músculos adquieran tono y flexibilidad, lo que le permite tener un patrón para andar más fluido. De hecho, tenemos este concierto en formato DVD a la venta para continuar recaudando fondos para hacer nuestra cita anual en Miami para seguimiento. Como nosotros también somos músicos profesionales, planeamos continuar ofreciendo conciertos para poder ayudar con los costos médicos generales de nuestra hija, asà como a otros niños en situaciones similares en Puerto Rico.
Es gracioso cómo pasamos por momentos tan difÃciles con la salud de nuestros hijos y luego, cuando nos encontramos con un giro más suave en el camino de la vida, nos volvemos aprensivos y dudosos. En la corta vida de mi hija, ella ha pasado por cerca de ocho transfusiones y al menos tres hospitalizaciones. Los escalones normales en la vida de un niño adquieren un nuevo significado. Por ejemplo, conseguir una bicicleta. A pesar de los muchos beneficios de andar en bicicleta, hemos optado por no comprar una bicicleta porque creemos que los riesgos de las lesiones involucradas son demasiado altos, dado que su equilibrio se ve afectado por la debilidad comparativa en su lado izquierdo debido al PC. Por ello, consideramos que nuestra calle está abierta al tránsito general y, además, debe soportar el costo de una bicicleta más grande o especial con ruedas de entrenamiento adaptadas, porque siempre ha sido más alta para su edad. Ella ha montado triciclos y bicicletas prestadas en ocasiones con la ayuda de su padre.
Ahora, mi esposo y yo hemos llegado a la coyuntura en la que estamos pensando en conseguirle un cachorro. Yo tengo un perro guÃa y mi perro también es una mascota cuando estamos en casa, pero la experiencia es diferente para mi hija porque tengo que ser su cuidadora principal. Perdimos a mi primer guÃa, que se jubiló y vivÃa con nosotros como mascota en mayo del año pasado, no mucho después de regresar de simposio. Esta pérdida dejó un gran vacÃo en nuestra familia y Fabiola lloró profusamente cuando tuvimos que decirle que Peace se habÃa ido al cielo de los perros. La pérdida nos hizo considerar la idea de conseguir otro perro mascota más en serio.
Sin embargo, me pregunto si no fue mi esposo quien principalmente querÃa un nuevo perro, pero aquà estábamos (o lo estaba, porque él estaba convencido de tener uno) sopesando los pros y los contras. ¿Los dientes puntiagudos y las garras de un cachorro la arañarÃan y le harÃan sangrar? ¿MorderÃa su cara o nariz, como un perro mascota mÃo? He tratado principalmente con perros adultos entrenados y no estaba seguro de cómo manejarlo. Comencé a llamar a mis amigas de HFA e incluso a nuestro hematólogo. Me dieron mucho apoyo e ideas sobre cómo podrÃa protegerla; mangas largas y pantalones, entrenamiento profesional para el perro, etc. Ninguno de ellos habÃa pasado nada importante debido a un perro mascota. La verdad era que estaba aterrorizada. ¿Cómo podrÃa potencialmente ponerla en peligro? Por supuesto, no estaba pensando en las cosas positivas que un cachorro podrÃa significar para ella; Como la risa, el amor y un sentido más amplio de responsabilidad. Sin mencionar, mantenerse alejado de la tecnologÃa por al menos algunos perÃodos de tiempo.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.
