Yesterday, we were in the hospital again for Star’s factor infusion. After her confinement early June, her menses stopped for about two weeks and then it came back. Thankfully, she informed me on Day 1 this time so we counted 10 days and decided that if it still didn’t stop on the 10th day, we would go for infusion.
Hospital visits for factors infusions and transfusions are already part of our “normal” life like going to the grocery or to church on Sundays. There are times when we still get jitters like the last time when she suddenly passed out. But I realized that when you are proactive — taking conscious efforts to understand your child’s condition and finding ways to manage it well — the stress level is minimized.
As an active advocate for people with bleeding disorders, I’ve met many parents and caregivers (like grandparents and relatives) who are driven to despair because of their children’s condition. Sadly, I even know of some couples who have separated as a result of their inability to cope with their child/children’s condition.
Raising a child with a special condition — whether hemophilia or something else — poses a different set of challenges. On top of that, living in a country like the Philippines where public healthcare is so wanting in so many ways, can add up to the daunting task of raising a child with a rare disorder like hemophilia.
Children with hemophilia have unique needs compared with others, even their own siblings without the condition. And yet, we parents need to be careful NOT to put our children with special needs inside a bubble. Below are some basic tips that may be helpful, particularly to parents in developing countries like the Philippines.
- Seek expert opinion. Aside from the pediatrician or your family/public health doctor, you need a hematologist to help you with your child’s condition. But what I found out is that — not all hematologists are equal. My daughter started to show symptoms at birth (unknown to us, her blue “birth marks” were already early signs of an inherited bleeding disorder). And then at three weeks, she had a nosebleed. We had seen so many doctors in a span of seven years until we finally found the right hematologist. How did I know that she was the right one? She was the first one who finally shed light to us that Star’s perennial nosebleeds and bruises could be symptoms of an inherited bleeding disorder. When the tests were done, it confirmed her suspicion.
- Learn anything and everything about your child’s condition. Education is the best tool in raising a child with special needs and minimizing its impact on his/her growth. Since hemophilia is a lifetime condition, it won’t go away just because you have had a few factor infusions or blood transfusions. The first step in learning is probing. Meaning, you have to find out the triggers. When does your child usually bleed? What was the weather condition? What did he/she eat prior to the bleed? What did he/she do? Write everything down in a journal and after a while, you will see a pattern. For example, because of my journal entries I found out that Star would nosebleed after drinking Coke Zero or Pepsi Max. When I researched about the relation of drinking softdrinks and bleeding, I found out that sugar substitutes like aspartame in Coke Zero and Pepsi Max are blood thinners and therefore, they cause bleeds. Another interesting discovery is that, Star bleeds more during high tides and full moons. It may sound funny but yes, there is a scientific explanation to that. According to my brother who was my Physics teacher in high school, since human body is made up of 50-60% water, it is affected by the gravitational pull of moon. Thus, you have the tendency to bleed more during full moon as compared with moonless days. The knowledge won’t stop your child’s bleeds of course. But at least, you get prepared for the eventuality. Aside from learning from your experiences, there are so many online resources about hemophilia. I have a long list on the right side of this blog (All About Hemophilia).
- Be proactive. Learning about your child’s condition is one way of being proactive. But putting into action what you’ve learn is another. Sometimes, we already know a lot of things. But when bleeds happen and the stress level is so high, we tend to forget what we’ve learned. And so, don’t wait for the stress level to go up. I know of a couple who give prophylactic treatments to their twin boys because they found out based on experience that infusing their boys once a week minimize the bleeds. They realized that when they wait for the boys to bleed before treating them, they spent more. Of course, very few Filipino parents can afford prophylactic treatment. In fact, I am not ashamed to admit that we do not do prophylactic treatment on Star simply because we could not afford it. But in other countries, the more developed ones that is, prophylactic treatment is “normal”. It is also ideal. But in a country like ours where the ideal is only aspirational, how do we become proactive? One way is — teaching your child to listen to his/her body and do RICE. Rest. Ice. Compress. Elevate. And don’t forget, at the onset of the bleed, use HEMOSTAN (tranexamic acid). But remember, if symptoms persist, call your hematologist. Don’t wait for your child’s condition to worsen before calling on your doctor.
- Join a hemophilia community. No matter how old your child is, it is always helpful to be part of a community. We learn a lot of things by talking to other parents. Being part of a community also makes the load lighter. There are many active hemophilia groups on Facebook. However, there is no replacement for personally meeting other hemophilia parents.
- Pray. Last but definitely not the least, always pray. Pray to thank the Lord for His grace. Pray for protection for your dear little one. Pray that he/she will not have a bleed on that day, or that if he/she has a bleed, to be healed quickly. And pray with faith in your heart that the Lord answers. I’ve experienced so many miracles and breakthroughs because of prayers. You will lose nothing when you pray but you will gain so much when you do.
“And the prayer offered in faith will make the sick person well; the Lord will raise him up.” ~~ James 5:15