Tag Archives: FH

new things afoot

Forgive an excited mother that awful pun, would you? Henry got his first prosthetic this morning!

Checking things out and getting his balance.

Henry’s wonderful prosthetist, Richard.

 

For now, Henry’s job is to get used to wearing his prosthetic while he does his usual baby things. He needs to learn to crawl, climb, and pull up with it, and he needs to work on standing on two feet rather than only his right foot. These things will help build muscles on his left side. We’ll go back to see Richard and Henry’s physical therapist, Colleen, in two weeks. 

We want to take a moment today to thank those of you who have prayed for us, wished us well, and loved us. We have appreciated each and every kindness, both material and not, and we feel blessed by you. Henry is so lucky to have such wonderful friends and family in his corner.This is by no means the end of his road, or ours, but it’s a milestone for us, and we’re glad to share it with you. 

Below, standing! And some practice steps!

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cast off!

Around four o’clock yesterday afternoon, Henry decided he was done with his cast and slid it right! off! his leg during a diaper change.

Cue lots of panic on my part. Dr. S agreed with Henry when he examined him this morning, though, so now Henry is cast and pin free. 

We go back in two weeks so that Dr. S can check the incisions and give us the okay to begin the prosthetic process. In the meantime, we’re looking forward to splashy baths! And maybe a little less to panic about. 

(Did you hear that, Henry?)

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recovery

  
It’s been a week since we woke up at 3:30AM to a hungry baby we couldn’t feed. It’s been a week since we drove dark streets to the hospital and joked feebly about the light traffic. It’s been a week since we distracted Henry during vitals, kissed his head, kissed his left foot, and gave him to the nurses. It’s been a week now, almost exactly as I write this, since Henry was wheeled from surgery to recovery. 

The surgery went well. Dr. S was able to perform the procedure he’d planned. To be honest, most of what Dr. S said after his initial declaration of success is a blur. I remember being thankful Henry was alive and as he should be. I remember the assuring tone of Dr. S’s voice. I remember holding the X-rays of Henry’s leg before and after. 

  
Seeing his little foot, see-thru, in its last moments as his little foot, was hard for us. It was harder, though, to see our baby so pale and groggy once they returned him to us. Harder still to listen to him crying, screaming, to spend hours bouncing and awkwardly cradling him, awake in the hospital room, trying to calm him as he came out of the anesthesia. Even harder to speak to him reassuringly, to hold him still as three nurses tried in vain to replace the IV he bit from his wrist in the wee hours of the morning. 

  
We came home the next afternoon. Since he didn’t have an IV, they weren’t doing anything for him we couldn’t. We thought screaming at home would be screaming at home, at least. As soon as we left the hospital, though, Henry was through with screaming. He fell asleep in his car seat before we left the parking deck. He stayed asleep through two pharmacies and a quick grocery run. He woke when Michael scooped him out of the car seat and into the house. As soon as we were all in bed, though, he fell right back to sleep between us, and we slept for three hours, more continuous sleep than we’d had in days.  

Henry spent Friday night and Saturday quite groggy. He seemed both perplexed and vexed by this, our boy who hates to fall asleep. He wanted to play, and did play, with blocks and a laundry basket and a finger puppet book I picked up in the hospital gift shop. But he glazed over quickly. Sometimes he just shut down, like a little baby robot. He didn’t smile much for a couple of days, didn’t laugh. But the willingness to play, the wanting to, helped us know our boy was in there. Still sunny. Still. 

  
Sunday was difficult. Henry was more alert than he had been, but this alertness came with something like agitation, maybe anger or fear. Whatever it was, it made Henry stop nursing. He was upset about it, I was upset about it. I didn’t know how to comfort him otherwise, and he didn’t want to be with me much anyway. Michael took care of us both all day. 

I was able to coax Henry back to nursing a bit on Monday, and by Tuesday he was pretty much back to his normal nursing habits. He laughed for the first time on Tuesday morning. By this time, he also wanted to get back to crawling all over the place and pulling up. The problem? The pin in his leg means he’s not allowed to put weight on his cast. This kid is not into limits. We spent the first half of the week trying to keep him off the cast. Now we’re working on teaching him how to pull up with his long leg rather than relying on the shorter one. We aren’t sure how much we’ll really be able to keep him off the cast between now and January 6, when he next sees Dr. S.   

We want to thank those of you who have shown us support and generosity over the last week. And longer. We thank you for your prayers, your kind thoughts, your inquiries about Henry, your offers to babysit, the dinners you’ve brought or offered, the texts and cards you’ve sent. This week has been so difficult, so burdensome, but for many reasons it’s also been a blessing to us. You are some of those reasons. Keep reaching out to us, please. Keep Henry in your thoughts and in your hearts. We three still have a long road to travel. 

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’twas the night before surgery


Henry’s been busy today, playing playing playing. Banging on boxes and tins, fitting cylinders into rings, chasing the cat. We have been busy worrying, waiting, and watching. We’ve had a good day together, though. Our boy just babbles and sings along his merry way. 

Our hospital check-in time is 5:45AM. If you have a good thought to spare, send it our way. We’ll update here when we can. 

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clang clang with love (day 28)

Woah, this video is GIANT.  Sorry.  I don’t know how to fix it.

I asked Michael to pack Henry’s toys for our quick trip to Middle Georgia. One of the things he threw into the bag was this tin from a “My Baby’s Print” kit. As you might guess, we bought the kit to capture–this is not the right word–Henry’s footprint before his surgery.  Once we got it home we discovered we needed something else, so we haven’t yet done the printing–again, not the right word–but Henry has been having a great time playing with the tin. A super time. A LOUD TIME. It’s so wonderful. This funny, music-loving boy of mine has turned something I thought was sad, something I might have used as a simple container for the print, stowed in a closet until Henry asked for it, into a favorite toy. He’s made such joyful noise. That is something to be thankful for. 

I think we’ll make the print tomorrow. Definitely this week, anyway. I still haven’t bought the other stuff we need, maybe because I’ve been avoiding it. Avoiding thinking about the surgery, anywa you, and our particular need to make the print in the first place. It’s hard.  But Henry makes things easier, gives me perspective, if I let him.
Maybe it’s cliche, or a bit mixed up, but all this reminds me of 1 Corinthians 13. And because I want to read it, because I want to keep remembering it, I’ll paste it here.

1 If I speak in the tongues of mortals and of angels, but do not have love, I am a noisy gong or a clanging cymbal. 2 And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but do not have love, I am nothing. 3 If I give away all my possessions, and if I hand over my body so that I may boast,[a] but do not have love, I gain nothing.

4 Love is patient; love is kind; love is not envious or boastful or arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful; 6 it does not rejoice in wrongdoing, but rejoices in the truth. 7 It bears all things, believes all things, hopes all things, endures all things.

8 Love never ends. But as for prophecies, they will come to an end; as for tongues, they will cease; as for knowledge, it will come to an end. 9 For we know only in part, and we prophesy only in part; 10 but when the complete comes, the partial will come to an end. 11 When I was a child, I spoke like a child, I thought like a child, I reasoned like a child; when I became an adult, I put an end to childish ways. 12 For now we see in a mirror, dimly,[b] but then we will see face to face. Now I know only in part; then I will know fully, even as I have been fully known. 13 And now faith, hope, and love abide, these three; and the greatest of these is love.

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just over a month to go

Previous posts about Henry & fibular hemimelia:
Henry’s Little Leg
Scheduled

On the way into the doctor’s office yesterday, we marked the gorgeous leaves that had fallen in the parking lot–Henry, look at the leaves!  They’re so yellow!–and I reached into the diaper bag to make sure our notebook was still there.

We took a list of forty-two questions to our follow-up appointment with Henry’s orthopedist. Dr. S was patient and forthright as we went down the list, concern upon concern broken into categories. Henry wriggled in our laps, not so patient. Maybe a glimpse of our own insides, humming and restless with stress, with worry. Once we let him down, he made a beeline for Dr. S, who let him play with his badges and still, somehow, kept his focus on us, kept saying things like osteotomy and ligate, never missing a beat.

It was comforting, somehow.

Not all of the answers we got will matter to anyone but us, but some we’ll share here. To educate you. Maybe to comfort you. To fill in some of the blanks and we don’t know yets. To keep you posted. To keep a record.

What surgery will Henry be having?

We’ve put this question here again because our answer is now both definite and different. Dr. S will be performing a modified Boyd amputation along with a tibial osteotomy. In more general terms, this means Henry’s leg will be amputated through the ankle, but his heel bone (calcaneus) and heel pad, the usual weight bearing structures of the lower limb, will be preserved. Henry’s heel bone will be fused to his tibia. As we’ve mentioned before, Henry’s tibia is bowed. There wasn’t a fibula there to keep it straight. The osteotomy’s purpose is to straighten the tibia. Both the Boyd procedure and the tibial osteotomy aim to give Henry a longer, straighter left leg. This will help with prosthetic use, among other things.  The ultimate goal, of course, is to allow Henry to walk as easily as possible.

The surgery will take place on December 10. We aren’t yet sure what time of day.

What will Henry’s recovery be like?

We have more definite answers here, too, though they can’t possibly encapsulate or prepare us for the experience.  We’ll be in the hospital between one and three days, depending on how Henry is doing.  A metal rod or pin will stabilize the fused bones in Henry’s leg, and he’ll have a cast to protect his bones and the pin.  This will be put on before he leaves surgery.  We’re fairly certain he’ll have a long leg cast rather than a spica cast, for which we’re thankful.  The current estimation re: how long he’ll be in the cast is 4-6 weeks.  We have a follow up appointment for X-rays on January 6, at which point Dr. S will make a choice based on how well Henry is healing.

This is a major surgery.  Recovery will be difficult.  Our focus will be on keeping Henry as comfortable and happy as we can.  That will include cuddles, pain management, babywearing, and keeping to our usual, quiet routines as best we can.

Can we visit Henry? When? Will we see you at Christmas?

Dr. S has said we can resume activities like taking Henry to school and church, seeing our loved ones, and spending time at the park as soon as we think Henry can handle them.  We won’t likely travel during the Christmas season, and we probably won’t have house guests either. We will invite visitors when the three of us are ready. That may take a while.

We realize this isn’t the answer some of you will want. We know you love us and want to support us. We know you love Henry, and we know you’d like to see him. You don’t have to be physically present to show us how you feel. We can feel your love and support from wherever you happen to be.

When will Henry get his prosthetic?

This depends entirely on how well and how quickly he heals. We will have a consultation with the prosthetist while Henry is in the hospital, at which point we might have more to tell you. Our best guess is that he’ll be fitted a few weeks after his cast comes off. He’ll receive the prosthetic once it’s been made, likely a few weeks after the fitting.

What can we do? What do you need? 

Many of you were kind enough to bring or send us a meal after Henry was born. That was really helpful, so we’ll be setting up another sign-up sheet at TakeThemAMeal.com.

Henry loves to check the mail with his daddy in the evenings. If you’d like to send Henry well-wishes or other baby-safe mail, or if you want to brighten our days with a holiday card, please ask for our address.

Many of our friends and family members have sent us links to articles or blogs about amputation, successful athletes with prostheses, new prosthetic technology, etc. Although we appreciate that so many people are thinking of us, we have done a lot of looking and searching on our own. In addition, many of the complications older amputees face, such as phantom limb pain and blood flow troubles, do not apply here. Mostly, we have plenty to think and learn about with just our Henry and his particularities.

Please do ask any questions you have. We’d rather have you ask than speculate.

If we need anything else, we’ll say so. 

Finally, please keep this boy, keep all of us, in your thoughts and prayers.

  

    

  

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Scheduled

IMG_5453-0Since late August, we’ve been pretty busy.  Henry especially!  He’s figured out pulling up, cruising, and climbing, and we’ve put up baby gates.  He’s just about mastered waving, though he lacks consistency.  He’s cut four more teeth, and another is poking its way through now.  He’s graduated to a convertible car seat, gotten dressed up for his first school pictures, and learned to drink from a cup.  He’s become even more charming and outgoing, and he seems to make friends wherever he goes.  Meanwhile, we grown-ups have watched all this in wonder while trying to keep up with work and stay connected.  It’s been a beautiful few months for our little family.  We’re figuring out a rhythm.  Together we’ve taken our first family vacation, visited with family and friends, and spent time working in our church’s pumpkin patch.

We’ve also had another visit with Henry’s orthopedist.  As we’ve mentioned, Henry has fibular hemimelia, a congenital absence of the fibula.  Since Henry is so far ahead of schedule mobility-milestone-wise, we’ve had to schedule his surgery sooner than we thought we might.  In cases like Henry’s, most specialists consider it ideal for the child to take their first steps with their prosthetic.  So, Henry’s surgery is scheduled for December 10th.

IMG_5398 What surgery is Henry having?  Where will he be?
That’s a great question.  Henry’s orthopedist first told us he would perform Syme’s amputation, but at our most recent appointment said that Henry might be a good candidate for a Boyd amputation.  With a Syme’s amputation, the heel pad is disarticulated from the heel bone and placed beneath the remaining tibia for cushioning.  However, the heel pad can slip out of place over the course of an amputee’s life.  The Boyd procedure preserves the heel bone and fuses it with the tibia, giving another weight bearing structure while keeping the heel pad in place.  It requires a longer recovery time, however.  Whichever happens, Henry will come through the surgery with the best leg for him.

Henry will be at CHOA-Egleston, likely for one or two nights.

What will Henry’s recovery be like?
Henry will be in a cast for between four and eight weeks following the surgery.  There’s such a wide margin there because we aren’t exactly sure yet which surgery Henry will have.  He’ll be about as happy about this as any mobile, curious, and independent eleven-month-old baby would be.  We’re busy thinking of ways to keep him as happy as we can (and his routine as typical as possible) between the surgery and his follow-up appointment on January 6.

Meanwhile, we’ll be celebrating Henry’s first Christmas season.  And soon after that, his first birthday!

When will Henry get his prosthetic?  They can do so much with them these days!
Generally, kids are fitted for their prosthetics as soon as their casts come off.  They receive them a few weeks later, once they’re built.  He’ll go in to try it out, the prosthetist will make adjustments, and then we’ll get to bring it home.

Henry’s first prosthetics will be relatively simple.  Later on he might end up with something like the ones you’ve seen in the media.  It’s true, prosthetics have come a long way.  But high-tech prosthetics are not always available to all amputees, and changes to Medicare guidelines for prosthetics could both (a) deny prosthetic coverage for those with Medicare and (b) influence private insurers to follow suit.

What will you need?  What can I do?
We don’t know what we’ll need yet, but we’ll let you know once we do.  We’re still a bit surprised at how quickly things will happen.  For now, as always, we appreciate your prayers and good thoughts.

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Henry’s Little Leg

Henry at 7 months oldGorgeous kid, right?  Practically perfect in every way.

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.

Henry at 6 months old

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.

This is our first photo of Henry.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.

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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.

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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?

IMG_3569Henry 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.

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