Clotting Disorders: Finding Out Our Son Had Hemophilia

Finding Out Our Son Had Hemophilia
We hoped and prayed (along with half the state of Texas) for a girl, and, positive as we were, we just assumed that that’s what we would have.
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When my wife discovered she was pregnant, she came into the kitchen where I was getting dinner ready and sheepishly, hesitatingly, told me the big news, hoping that I wouldn’t have a heart attack (we were planning on waiting a couple of years to have our first child). I put on a big smile (not a fake one, I was genuinely pleased), and we hugged and kissed and laughed and thanked God. After a few minutes of celebration, we discussed the possibility that our unborn child might have hemophilia, which is a chronic disorder that impairs the body’s ability to control blood clotting or coagulation.

My wife, Charis, carries the hemophilia gene on her X chromosome. She inherited this trait from her father. Although females can carry the disease and pass it on to their children, they rarely suffer the effects of the disease. If we were to have a boy, there was a 50 percent chance of him inheriting hemophilia. So, since the odds were approximately 50-50 that we would have a girl, our baby had a 25 percent chance of being born with the disease. We hoped and prayed (along with half the state of Texas) for a girl, and, positive as we were, we just assumed that that’s what we would have.

A few months later, at our prenatal appointment, Charis was lying half-naked on her back, the nurse rubbing something that looked like a phaser from Star Trek over her inflated, jelly-coated belly. We eagerly watched the sonogram monitor perched above the bed, showing fuzzy, gray, barely discernable images of our unborn child. The nurse casually pointed out the arms and legs and the rounded head, and, almost as an afterthought, the penis. While we didn't care from a gender point of view whether we had a son or a daughter (as long as he or she was healthy), we immediately clasped hands and cried, knowing that the odds had just doubled that our precious baby would be born with hemophilia.

Shortly thereafter, we made an appointment with a geneticist, who ran some tests and scheduled amniocentesis. After the amnio, it was time to play the waiting game. The day we were to find out whether or not our son had hemophilia, I went on in to work, which I had mixed feelings about. Should I sit around, worrying myself sick, or should I adhere to my daily routine? Regardless, my wife was home alone when she answered the phone and got the bad news. She called me at work, crying, and I went home immediately to be with her. Our world was shattered.

When I got to the house, you can imagine the scene that followed. Once my wife and I collected ourselves, we took the short drive over to my parents’ house to tell them, and my mom cried with us while my dad did his best to reassure us that everything would be OK and that they would be there for us. After a brief visit, Charis and I were feeling antsy and anxious, convinced that we had to go somewhere—anywhere—so we took off in the car, destination unknown.

We ended up at a bookstore in Dallas, which is about 30 minutes or so from where we live in Fort Worth. Unfortunately, it was about as appealing as going to the grocery store right after a barbecue buffet (I couldn’t even concentrate long enough to read a blurb on a dust jacket), so we got out of there in a hurry. We proceeded to nearby Bachman Lake, walking around the small body of water, holding hands, letting the sunlight soak into our skin. We watched as airplanes taking off from Love Field soared majestically overhead, looking like giant silver futuristic birds. The roaring of the engines washed over us as though trying to cleanse our troubled souls.

Over the next few weeks and months, the initial shock of the news starting to wear off, we educated ourselves on hemophilia, met with support groups, and prepared for the birth of Ryan, whom we named after Ryan White (subject of The Ryan White Story, a book and movie chronicling the life of an amazingly brave teenager who contracted the AIDS virus through clotting factor). When the time came, we were as ready as we could be for Ryan to be born (as though anyone is truly ready for the surprises and challenges of being a parent, regardless of the health of the child).

After a long, difficult labor, which followed a long, difficult pregnancy, Ryan came into this world happy (actually, he was crying like crazy) and relatively healthy in spite of his serious but manageable disorder. The pregnancy was difficult for all the typical reasons (nausea, bloating, and the like), as was the 18 hours of labor, but hemophilia didn’t play a role during the actual delivery. He was born by caesarean section not because of his hemophilia but because of his 10-pound birth weight.

In the ensuing years, hemophilia has reared its ugly head on a number of occasions. Since hemophilia prevents blood from clotting, spontaneous bleeds, which are inner bleeds resulting in painful swelling and potential long-term damage, do occur from time to time. Fortunately, thanks to clotting factor, which Ryan infuses himself with every other day, he lives a relatively normal life and can ride his bicycle, play basketball, and do just about anything else a non-hemophiliac child can do. Our proximity to Cook Children’s-Fort Worth and its hemophilia treatment center has certainly been a comfort and a blessing in this regard.

Other than the time Ryan’s body developed an inhibitor, which temporarily prevented the clotting factor from doing its job (resulting in painful bleeds and a stint in a wheelchair), finding out Ryan had hemophilia has been just about the worst part of the disorder, at least from an emotional standpoint. Charis and I were terrified that we wouldn’t know how to handle hemophilia, that Ryan would suffer pain on a daily basis (like Charis’ father did, who was born during a time when hemophilia treatments were far more primitive), and that he would grow up bitterly resenting the fact that he is different from most kids.

Naturally, we continue to pray for our son’s safety (traumatic injuries are much more problematic for a person with hemophilia) and for a cure for hemophilia, but Ryan, who is now 13, handles his disorder like an old pro, bravely sticking a needle in his arm every other morning (to infuse the factor), rarely complaining about the condition, and in general having a good attitude about his overall health. He’s a tall, strong, handsome boy who sure doesn’t look like someone with a chronic disorder.

Finding out Ryan had hemophilia was indeed devastating, at least at the time. However, thanks to his strength and to the support and love of family, friends, doctors, and nurses, hemophilia is but a footnote in our family’s history.

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