Our household looks a lot like the average family; a coupe of kids, a beloved pet and constant chaos. We ever so skillfully (insert sarcasm) navigate pre-school, after school activities and a whole lot of fun. By all accounts our life is pretty “normal”.
A new addition to our normal has been the management of our son’s hemophilia. A year ago we didn’t know what hemophilia was, but along came Jai and with him and introduction to this bleeding disorder.
Hemophilia is a rare disorder in which blood doesn’t clot normally because of insufficient blood-clotting proteins (clotting factors). A common misconception is that hemophiliacs bleed faster or more profusely. External bleeding is not the highest risk for hemophiliacs. Internal bleeding of the organs, tissue and joints are the big concern. These types of bleeds can be serious and have damaging side effects. These are the ugly facts, but do not fear, life with hemophilia is joyful!
I will not lie and say our entire experience with hemophilia has been a sunny walk in the park. In the beginning his diagnosis was very upsetting. It sounded serious…so it must be bad, right? Will he have good quality of life? Will we be at the hospital all the time? What will this do to our family?
A year after asking these questions, I’m here to say with a fair amount of confidence, that hemophilia is not so bad. In fact, it’s quite manageable and pretty low on the scary scale (this is an unofficial barometer used by moms to embrace or avoid a freak out). With knowledge and time your child’s hemophilia becomes just another part of life. You schedule in the treatment just like you would soccer practice or making dinner.
If hemophilia finds its way into your adoption plan there are Hemophilia Treatment Centers (HTC’s) where insanely smart doctors & nurses work. I’m not talking about your run of the mill smart. I’m talking about raise the bar, top of their game, have-to-dumb-it-down-for-the-rest-of-us smart. These are exactly the kind of specialists you want managing your child’s care. They can convert a new bleeding disorder mom, who comes through the door panic stricken and totally crazed, into a confident, bleeding disorder boss. There are a lot of steps involved in that process, but you get there.
We didn’t set out looking for a child with hemophilia when we threw our hat in the adoption ring. It was more of a surprise party situation. Without our knowledge or consent, our plan ended and another began. It was bigger plan, definitely a tougher plan, but ultimately a much better plan than we could have designed ourselves.
If I had been able to plan for adopting a child with hemophilia, here are a few points that would’ve been helpful to consider:
• Hemophilia is an expensive chronic disease. There are positively life altering pharmaceuticals on the market for hemophiliacs, but they come with a high sticker price. Good insurance is a must.
• While it isn’t mandatory that you live near a HTC, it certainly makes life easier if you do. In the beginning you will make several visits to your HTC. Once your hematologist has devised a plan and things are humming along, you should only have to visit once or twice a year. However, in an emergency you will want your HTC close. Early treatment for bleeds is critical.
• Ask your HTC to set you up with the best home nurses your insurance will allow. They will be your teacher and front line of defense when you are concerned and need answers. They know exactly how to handle children who would rather be outside playing than getting an infusion.
• All hemophilia treatments are done through IV infusion so leave your fear of needles at the door.
• Research the pros and cons of having your child get a port. Not every child needs it, but if you do it’s a game changer. We had bad luck accessing Jai’s tiny veins with needle sticks. The port gave him relief from that misery and we gained the independence to infuse him ourselves.
• Research prophylaxis. It’s a beautiful thing. Its hope and confidence for you and your child.
• Some children with hemophilia may develop what is called an inhibitor. Although it’s uncommon and dreaded by parents, it too can be managed and even eradicated. There’s no reason to worry until you know your child has developed an inhibitor, but it’s important to be aware of the possibility.
• Find a hemophilia support group you connect with. There is everything from regional meet-ups to Facebook groups. You can get really involved or just browse posts from other hemo moms. There’s a bleeding disorders community right here on NHBO. Simply knowing you’re not alone is key.
• Most importantly, know that your entire life won’t be hemophilia 24-7-365. It is all consuming in the beginning. Just go with it and educate yourself during those initial sleepless nights. Read all of the Laureen A. Kelley books you can get your hands on. After six months you’ll have the hang of it.
Our morning routine now includes doing infusions at the kitchen table.
Jai is very comfortable with his treatments. It is oh so fun to play doctor with the empty syringes!
We do prophylaxis three times a week. Some kids do it twice a week, others every day and some only treat as necessary. Everyone’s hemophilia traits are unique and treatment plans are individualized. Hemophilia is just one small part of a child’s life. Don’t let it stop you from adding one of these beautiful kiddos to your family. It will open your world to people and possibilities that you would have missed otherwise. Let it in and I promise you won’t look back. If you’re thinking about adopting a child with hemophilia I bet you already have what it takes to be a super-hemo mom.
— guest post by Candice