Gaining Independence: Living with Hemophilia

March 23, 2018 adopting a boy, Blood Conditions, Faith, hemophilia, hemophilia A, March 2018 Feature - Blood Conditions, Medical Momma 0 Comments

It’s hard to believe that our oldest son has been home for almost two and a half years. Before we adopted him, my biggest worry was his medical condition.

He has Severe Hemophilia, a genetic bleeding disorder.

In a nutshell, this means that his blood is missing one of the proteins that help it to clot. Because of this missing clotting protein, he has an increased risk of internal bleeding, which can be caused by traumatic injury, or occur spontaneously.

Because his level of clotting protein is so low, in an effort to minimize the risk of internal bleeding, he receives weekly intravenous infusions of a clotting protein replacement factor. This might sound scary – and to us, when we were waiting to meet him, it was both overwhelming and very scary. We wondered how we would keep him safe, what it would mean for his daily life, if we would ever be able to walk away from him at school and live through a day without worrying ourselves to death.

When we met him in China, he was not receiving any treatment for Hemophilia. You could see evidence of this all over his body. On family day, he was covered in bruises. I remember when we were in Guangzhou waiting to travel home, I put him in the toddler carrier to walk him around the hotel with the hope that I could get him to take a nap. The next day, as I watched him toddle all around our hotel room, I saw deep bruises all over the backs of his thighs. I don’t think I have ever felt as bad in my life as I did when I realized that they were from putting him in that carrier the day before.

On our second night home, we were up fighting jet lag at 3 am, and he fell back and hit his head on a xylophone toy in his play room. One giant knot on the back of his head, and a lot of crying later, we rushed him to the ER for a CT. He was OK, but we felt that we were in over our heads.

I wondered if we would always feel this way.

The answer is a resounding no. The learning curve for Hemophilia followed a similar trajectory to the one we were on for parenting in general. As we figured out what made our little guy tick and how to love him best, and as we strengthened our muscles to carry him all over town, we began to understand Hemophilia too.

The first months home were hard. We couldn’t give him his medicine ourselves, so we had a home health nurse come to the house. I had such a hard time watching my baby get an IV, and the poor nurse had a terrible time finding his veins. We tried this for several weeks, and we all quickly reached our breaking points. For about the next year and a half, twice a week, we would trek over to the local children’s hospital hematology clinic, where he would receive his infusions. It was generally easy, and the medicine worked very well. He did not have a single incident with bleeding during that time. (Actually, he still hasn’t had a single bleed since we got him home from China.)

In the Fall of 2017, he started preschool. We were bonding more and more as the months went on, and I started to learn how to find his veins so that I could begin to do his IVs at home. The nurse at his hematology clinic gave me a rubber arm to bring home so that I could practice without having to stick my husband. It was easy, but I had a hard time picturing how I would ever put the needle into my baby’s arm.

The clinic agreed to let us give our son the first several infusions there, so that I could be very comfortable before we started doing them at home. I remember the first time, I was so incredibly nervous as I mixed the meds, and prepared to find his vein. There were three nurses in the room with me, ready to take over if things started to go south. My legs were shaking as I prepared to stick him. I guess at some point, I just decided to go for it. Miraculously, I found the vein on the very first try. I felt so accomplished.

It wasn’t always as easy as that first time, but I did start to become more comfortable as the weeks went on. I knew that I had to become fully confident before we traveled to China to adopt our second son (which we did last November). Our oldest was coming to China with us, and we would have to do a couple of infusions while we were there.

Well, we did it! We traveled to China with clotting factor, and I was able to administer his IVs in our hotel room. Two years ago, if you’d have told me I would be doing this, I would have laughed, and said no way!

My son is the bravest little boy I know, and he has made his mama much braver than she could have ever imagined.

Although Hemophilia was our biggest worry as we waited to adopt him, it has become something that I rarely think about during the day to day. He is just like any other four-year-old little boy. He is active. He loves to run and play. He loves to wrestle with his brother. And thankfully, his medicine keeps him healthy and safe.

Unfortunately, that medicine is really hard to come by in China. I’ve been told that the average life expectancy for a person with Hemophilia there is only in the late 20s. Many of our kiddos with Hemophilia come to us with joint damage from repetitive bleeding into their elbows, knees, and hips.

Much of this damage is potentially reversible with proper treatment, but these guys really can’t thrive without medical care.

We have a wonderful community of adoptive parents on Facebook that can walk you through any questions you might have about parenting a child with Hemophilia – it’s called Hemophilia Adoption Advocacy. Please come and chat with us.

All these boys need is someone to see them, and realize that they are amazing little boys!

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