If you look closely, you’ll notice that Henry’s left leg is a little different from his right. Henry has a condition called fibular hemimelia. He’s no less perfect for that, obviously. Maybe you’ve noticed something before and thought it was a trick of the camera, or a trick of the light, or maybe just your mistake. Maybe you’ve noticed something before and filed it away to ask about later. We’d like to educate you a bit about FH, what we’ve learned, and what’s to come for our family.
Fibular hemimelia is the congenital partial or complete absence of the fibula, the bone in the lower leg that supports the tibia. FH is a rare condition (approximately 1/40,000 births, in males about twice as often as females), but it’s the most common congenital long bone absence. It’s associated with both (a) a difference in leg length and (b) other deformities of the foot, including syndactyly, oligodactyly or polydactyly. Henry’s fibula is completely absent, and his much shorter left leg has a rudimentary ankle joint and just three toes (oligodactyly).
Often, because the fibula is a generally highly visible long bone, its absence can be detected via ultrasound and parents can begin to prepare. (For what? That’s complicated.) We had lots and lots of ultrasounds while I was pregnant with Henry, several of them specifically meant to measure growth (which can include limb length), but we didn’t know about Henry’s FH before he was born. We found out in the delivery room, but not for some time.
Here’s a bit of our birth story.
When Henry was born, the doctor didn’t announce his sex right away. We had to ask. After the doctor finished with whatever doctors do to brand new babies (cutting the cord, etc.), he placed Henry on my chest and belly. I covered him with my hands, pronounced him perfect, and the charge nurse covered him with a receiving blanket. He stayed like that for some time, warm and wet against my skin. Then the charge nurse lifted a corner of the blanket to put on Henry’s hospital bracelets. Her face shifted a bit, and she said sort of quietly, “Okay, Baby only has three toes on the left leg.” High from hormones and pain, I took it in stride.
Okay, I said to myself. Maybe aloud. We’ll handle this. He’s amazing, and he has us, and it’s going to be fine. Michael didn’t have the benefit of hormones. At first, he thought the nurse was joking. Once he realized she wasn’t, I definitely said aloud, He has us. He’s going to be fine.
They took Henry from me, then, and placed him on a table. They inspected him in the glow of the warming lights. I craned my neck to see while the doctor stitched me up. Michael left my side and went to our son. They suspected that he had a club foot. They called for an orthopedics consult, but it was Saturday night, and the person on call…wasn’t really super, to be honest. She looked at Henry, declared her ignorance, and whisked him away for x-rays. He was gone for some time. It was horrible. They started to move us to the mother and baby ward just as he came back to labor and delivery.
We knew nothing at all until morning, and then we knew very little. A pediatrician we never saw again–thanks be to God, for our sakes and hers–came to our room, gave us the term fibular hemimelia, and asked questions like, Were you in a car accident when you were newly pregnant? and Did you happen to trip or fall during your pregnancy?
The answers are no and no, in case you wonder. We later learned that nothing I had done, or had done to me, would have made any difference. But not before we both spent time agonizing over whether we’d caused our child harm. The questions kept coming from well-meaning family members and friends in the first days and weeks we spent at home. Did you take such-and-such a thing? I’ve heard… Did you do such-and-such a thing? I’ve read… No, I didn’t. And no, it wouldn’t have mattered either way. FH is a congenital malformation, with no known cause, that occurs in the first trimester.
In the newborn haze, in the mother and baby ward, we had more pressing things to deal with. We’d just met our baby. He was losing weight, his sugar levels were off, his latch wasn’t good, we couldn’t sleep. People kept coming to our room to tell us they didn’t know anything, and all the typical brand-new-baby experiences seemed more and needlessly complicated. Newborn babies have to endure several rounds of heel pricks while they’re still in the hospital because the heel is the best place to get blood from a baby. Through some geometry of the typical foot, one of our nurses explained, they can decide where to prick the newborn so that they get a good blood sample while avoiding nerves and arteries. Generally, nurses switch back and forth between feet. Henry’s typical foot soon bloomed with purple bruises. He began to cry frantically and pull his legs away when anyone touched him. We pled with the nurses to coordinate their draws. One took pity on him. She fed him the sugar water they use for circumcisions while she milked his heel for a metabolic screening. We wanted to go home. And since no one could tell us anything anyway, information would have to wait.
Since we didn’t know much, we didn’t say much. We weren’t sure what to say, or how. Besides, we were busy having a baby. We were busy loving him, trying to feed him, snapping a million impossibly tiny onesie snaps, counting wet diapers. Between the naps and visitors and lactation consults and weight checks of the early days, we slowly learned more. Mostly through Google. For weeks, no doctor we saw knew more than we did. Our first consult with Henry’s orthopedist was both a relief and a disappointment; rather than giving us more or new information, he confirmed all the things we’d already learned about fibular hemimelia and told us we had to wait for Henry to grow before we could know anything more about his particular case. So we went back to the busyness of having a baby. As Henry grew and changed and delighted us, as we all got a bit more sleep, things began to feel more normal. And his leg hasn’t stopped him, so far, from doing all the usual baby things. He rolled from front to back at ten weeks or so, and from back to front at four months. At five months he was crawling backward, much to his dismay. He figured out forward motion at six months. We were told he’d hit every milestone until pulling up, but he’s been doing that for a couple of weeks already now, and he’s beginning to think about cruising.
The long and short of it all is this: Henry’s leg has seemed like just another part of him and part of our day-to-day lives. The time is coming, though, when our day-to-day lives will involve a major surgery and recovery, a series of prosthetic legs, and questions about why and how all this happened. Our questions. Your questions. His questions.
Q: Is Henry okay? Are you okay?
Henry is absolutely fine. He is delighted with life, squealing with glee as we write this. His leg doesn’t bother him or hurt him. He actually sort of uses it to his advantage to pivot from crawling to sitting. He’s a little crooked when he pulls to standing, but this doesn’t seem to phase him.
We are…okay. Most of the time. We are sometimes sad about Henry’s different and more difficult path, of course. We feel about Henry having surgery the same way that you would feel about your baby having surgery. It’s awful. But the sadness waxes and wanes, and it generally disappears when we’re actually with Henry. One of the reasons we didn’t make a big deal about this before now is that we wanted people to know and love Henry without the weird shadows of pity. He’s a happy, growing, lovely kid with this wonderful laugh and an intense curiosity about him. He is so much more than his atypical leg.
Q: What is the little dimple on Henry’s left leg?
A: The dimple you’ve seen on Henry’s left leg is the apex of his tibia. This little dimple is fairly common for babies with FH.
Q: I relate best to famous people. Are there any famous people who have FH?
A: Yes. Aimee Mullins, Jessica Long, and Oscar Pistorius, who is really not the best role model or whatever, but who is probably the most widely known person with fibular hemimelia. The difference between Henry and these folks is that they’re all bilateral amputees, while Henry’s FH is unilateral. You’ll also notice that they’re all famous for sports.
Q: You mentioned surgery. What does that mean for Henry?
A: Sometime in the next several months Henry will have his left leg amputated, most likely below the knee. This will allow him to have a series of prosthetic legs and feet that will allow him to walk, run, ride a bike, swim, and pretty much anything else he might decide he wants to do. In many cases babies who have an amputation only need one surgery, but he will need new legs and feet several times a year so his left leg can grow with the right one.
Q: Amputation? Isn’t there anything else they can do?
A: This isn’t an easy question for us. There are relatively new treatments for babies with FH that sometimes allow them to keep their leg and foot. Unfortunately there is a great deal of pain, risk, and time involved as this option requires a series of surgeries to the leg, ankle, and foot and additional leg lengthening procedures throughout childhood. Sometimes these surgeries do not work well, and a child might still require an amputation to be able to walk. We have chosen amputation because we feel it is the most merciful choice, because it involves far fewer surgeries, and because it reduces the likelihood of debilitating complications. This is the choice that gives our child the best set of options. It is not an easy choice but we feel it is the best choice for Henry.
Q: Is there anything we can do for you?
A: The amputation and subsequent recovery will be difficult for all three of us. We will likely have a better idea of what support we need as we get closer to Henry’s surgery. At this point we do not know for certain when his surgery will be, what his recovery will be like, and all the rest. Our next appointment with Henry’s orthopedist is in November, and we hope to know much more then. In the meantime we appreciate your love, prayers, positive thoughts, and good vibes.
Q: I have more questions! Can I ask them?
Please, ask away. We’ll also share more as we learn more. In the meantime, we’re going to keep loving this hilarious baby. We hope you will, too.