Ulnar Dysplasia Part 3: Recovery from Surgery

This is the third and final installment in a series about ulnar dysplasia and our experience with it through Zoey’s diagnosis and surgery. If you missed the previous two posts, check out part one here for some background info on ulnar dysplasia and Zoey’s diagnosis and part two here for the details about the actual day of the surgery.

After her surgery, Zoey’s left hand – her dominant hand – was in a cast up almost to her shoulder for six weeks. The most difficult part of that, surprisingly, was just keeping it dry. In particular, not allowing Zoey to take a bath. That kid loves taking a bath. Being that it was winter and we live in the Pacific Northwest, we also had to protect it from the rain liquid sunshine. We found that putting a bread loaf bag over the cast and rubber-banding it at the top made a nice waterproof cover. We would top that with one of my fun, decorative socks for looks and we were good to go. Zoey loved getting to pick out one of my socks each day to put on the cast. We also bought a couple of inexpensive fleece zip-ups in a size 2T (Zoey was currently wearing 12 month size clothes) and cut the left sleeve off of each one. We were able to fit her cast through t-shirts, and these gave us another warm layer with a long sleeve for the right arm to put on top. Another fun trick was using Babylegs as sleeves for her right arm. Zoey still likes to do that to this day.

Six weeks passed faster than I thought it would and it was time to get the cast off. Once again, we trooped back to Children’s hospital and waited in the orthopedic department. We had three separate appointments scheduled back-to-back: the removal of the cast, exam with the surgeon and then occupational therapy to make Zoey a splint for her hand. We sat Zoey on my lap and talked to her about how she was going to see her hand again soon and it was going to look “not pretty.” This was due to the fact that there would be black sutures, dried blood and blue surgical pen marks on her fingers, in addition to any scarring. The surgeon had taken a skin graft from Zoey’s left wrist in order to fully close up the skin on the sides of each finger. We also talked to Zoey about how her fingers would not be stuck together anymore and she would be able to move them all she wanted. We tried our best to give the whole thing a positive, excited tone. When the nurse finally did unwrap the cast, Zoey began to cry. Horrible, dismayed, really upset crying that continued after she saw her hand. My heart broke and it was all I could do not to cry and/or throw up. Not because of the sight of her hand – I am a nurse after all. It was because of the sinking feeling in my stomach, like I’d just been punched. I felt like Zoey was upset and grieving for the hand that used to be hers, the hand that we took away without giving her any choice in the matter, the hand that would never be back. This new hand was not the hand she was born with and had used so predominantly for 15 months before her surgery. I know Zach felt just as awful as I did – perhaps worse, not being fond of medical stuff to begin with – because he turned a bit pale and green and had to lie down on the table for a few minutes. I would just like to state that I do not in any way, see this as a sign of weakness in Zach. I’ve had a similar response at work when a patient was in extreme pain due to some procedure we were inflicting upon her. It’s the reaction of a person who so deeply cares about the hurt another person is experiencing that they actually go into a state of shock – the blood vessels dilate, blood pressure drops, they get woozy, cold, clammy and nauseous. Zach responded this way because he loves Zoey so very much. The years of learning to steel myself to this kind of situation as a nurse is the only thing that kept me from hitting to floor and completely losing it.

Later, I remembered when I had been six years old and had broken my leg. I’d had a cast from my toes all the way up my thigh for a couple of months. When they removed the cast with their little power saw I remember being terrified and screaming bloody murder through the entire process. Even when my mom demonstrated that she could touch the saw and it wouldn’t cut her – it would only cut the fiberglass cast – I still continued to scream. Louder and longer than when I broke the leg and when they set it. I was partly scared that they would indeed cut off my leg with the saw, but there was also a indefinable fear there that I couldn’t explain. Almost 25 years later, I still can’t, even though I remember that day with vivid clarity. I suspect Zoey was experiencing a similar fear. Sure enough, after Zoey’s cast was removed and we had finally managed to compose ourselves and soothe her, the nurse piped up to say that all kids seemed to respond this way to having a cast taken off and she really had no idea way. Personally, it took a lot of self-control not to throttle her and express very strongly that perhaps a heads-up BEFORE she removed the cast would have been nice.

Anyway. Moving on…so now the cast was off and we could see Zoey’s hand. Indeed, it was…not pretty. I was grateful that I had seen the pictures of her hand immediately after the surgery so I had some idea of what to expect. Upon examination, the surgeon declared the skin graft to be doing very well and everything healing quite nicely. We visited the occupational therapist next, who made us a small splint to keep Zoey’s fingers separated. She would wear this day and night for a couple of weeks, and then just while sleeping for a few more months. The purpose of the splint was to allow the skin graft and stitches to heal and to prevent “web creep” (the webbing between the fingers growing back up, which would then necessitate a repeat surgery). We did our best to follow these guidelines but found it very difficult to keep the splint on Zoey. Often, it would fall off during sleep, and if it didn’t she would peel it off as soon as she woke up. During the day it seemed to annoy her to have it on and she would fuss and ask us to remove it. Eventually, we just stopped using it.

At follow-up visits over the next year we learned that Zoey’s hips were still doing great and her hand was healing beautifully. She has some very large scars – not quite keloids, but definitely hypertrophic scars – but no sign of web creep. We took up massaging Zoey’s fingers with lotion several times each day to try to minimize the scarring, but I’m not sure whether it really helped at all.

There were two things during the weeks immediately after Zoey’s cast was removed that were most surprising to me. First, she had made a complete switch and is not strongly right-handed. Most kids tend to switch back and forth multiple times until they are two or three years old. Zoey had always been completely left-handed since the day she discovered how to control her hands. Ever since her surgery she has shown a definite preference for her right hand, although she can use her left hand better than I can. I had assumed she would go back to being left-handed once the cast was out of the way.This really makes me wonder about the wiring in her brain. Is she more like a lefty, a righty or something completely different?

The other thing that sent me for a bit of a loop was my reaction to Zoey’s new hand. When she was born it took me a few weeks to work out my feelings in response to Zoey’s differently-formed hand. I knew, with 100% conviction, that she was absolutely perfect, but my brain was having a hard time reconciling that conviction with the sight of her missing digits and webbed fingers. This quickly passed and I internalized Zoey’s hand as the new “normal.” So much so, in fact, that I have often found myself looking for “the small hand” on other children – Eleanor included – when helping to put on mittens or holding hands. It has become a normal part of a normal child for me. Now, I was faced with adjusting my acceptance of the situation all over again. The adorable little “scoop” Zoey had been born with was now replaced with two separate fingers and some very noticeable scars. It took awhile until I wasn’t surprised each time I caught a glimpse of her hand and expected to see one thing but instead saw another. However, this too quickly resolved. It is amazing how the overwhelming love of a child can make a parent’s psyche accept just about anything as long as their kid is okay.

So that’s Zoey’s story. A year later she still has some pretty significant scarring but uses her left hand with amazing dexterity. She is happy and beautiful and perfect, just like she always was. Putting her through that surgery was so incredibly difficult for us as parents, but we know it was the right choice for Zoey. I hope that she’ll agree when she’s old enough to hear this story for herself. I hope she’ll look back on pictures of her hand during that first year with curiosity but no memory of what she went through to change it. I hope she always knows just how incredibly, wonderfully, beautifully perfect she is and always has been.

7 thoughts on “Ulnar Dysplasia Part 3: Recovery from Surgery

      1. this is so close to home for me, my little girl is now 10 weeks old(6weeks premmie) and they picked up this exact same thing on my 12 week scan, is there a group that is of people with the same condition with their own children that we can join and talk to do you know?

        1. Kelly,

          Thanks so much for commenting and congratulations on your beautiful little girl! I hope she is doing ok – 6 weeks preemie must have been so scary for you!

          Our Children’s hospital has a Limb Differences support group but nothing for just UD. I have a facebook page for Momsasaurus and there are at least 3 other moms besides me with kids with UD who follow it. You are welcome to join us too. I’m trying to encourage everyone to post pictures of them and their beautiful kiddos there, as well as questions and support. We’ll make our own support group that spans the whole world! Where are you from?

          Hope to hear from you again soon and see you on the FB page! We’d love to see a picture of your sweet little girl!

          -Shenoah

  1. My mum didn’t know until I was born. The doctor told her I might have a heart problem but they later on discovered that I didn’t, I had ulnar dysplasia. The doctor said that I would never be able to crawl but out of my four sisters I was the only one that crawled. I find your daughter inspiring and I hope she grows up to be happy

    1. We didn’t know until Zoey was born either. You know what my first words to her were? “She’s perfect.” I bet your mum felt the same way. ๐Ÿ™‚ We find you inspiring too.

      1. Hey we found out at 12 week scan.were told we need to make a “decision” about the pregnancy as there will most likely be problems with bubs heart.the opposite bone from the ulna is one that is morw of a problem appatently.we went through with our pregnancy as ours was 8years in the making!and shes perfect.i look at other babies and think they look different as this is normal for us.we still get alot of looks from people.its frustrating but also Shenoah helped me change my way of thinking!people are just curious turns out.x

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