Ulnar Dysplasia Part 1: The Diagnosis

Some – or many – of you may be wondering about Zoey’s left hand. I’ve mentioned it a few times in passing, but ulnar dysplasia is not a very common thing for people to hear about. In fact, only about 1 out of every 100,000 babies is born with ulnar dysplasia. There does seem to be a genetic component – meaning it can run in families, or happen in families with similar genetic conditions – but, as far as we know, there is no history of anything like that in our family.

When Zoey was born and they first told us about her hand, we were shocked but not overwhelmed. At the time, dealing with the c-section and the circumstances of her birth was a lot more stressful than worrying about two missing fingers. For those who don’t know of haven’t seen from the pictures here, Zoey’s left hand has a thumb and the first two fingers, which, at birth, were fully webbed together. In the first couple days after Zoey was born, her doctor was brainstorming, researching and consulting to try to determine why Zoey was missing those fingers. The first theory was that her hand had been caught by amniotic bands (some kind of loose strands inside the womb – I picture something like seaweed) which had tightened around the hand enough to prevent those fingers from growing. The thought was that this also explained why she never once turned and was always stuck in the breech position, despite three attempts at having her turned by doctors.

Very shortly after her birth, however, we all began to realize that the amniotic bands theory didn’t fit. It didn’t explain why the other two fingers were webbed together, and there were no bones or scars to suggest that the other two fingers had ever existed at all. Our doctor referred us to a pediatric orthopedic surgeon who specializes in limb deformities. Within minutes of looking at Zoey’s hand and x-rays, she told us it was a classic example of ulnar dysplasia. She was very confident in her diagnosis and, honestly, I had a lot of confidence in her. Ulnar dysplasia is more often called ulnar club hand or “ulnar deficiencies of the forearm.” Zoey has type 1, the mildest form. Her left arm is only very slightly shorter than the right, she was full range of motion of her elbow, wrist and thumb, and the fingers were webbed together by tissue only (no bone). We were told that ulnar dysplasia is much more rare than radial dysplasia, however, in my opinion, it seems to be better to have the ulnar variety. Zoey has to be monitored for a somewhat higher risk of things like hip dysplasia and scoliosis (other bone issues) but radial dysplasia is associated with problems with the heart, kidneys and airway.

The doctor also told us that babies with ulnar dysplasia are often referred to as “angel babies.” When I asked her why, she said, “Because they all tend to be stunningly gorgeous.” While I appreciate the compliment to my daughter (and quite agree!), I don’t actually like the term. My heart about stopped when she said it because, to me, angels imply death. A thought a brand new mother would really rather not connect with her baby.

Anyway. So now we had a diagnosis. For the next year we monitored Zoey’s hips with x-rays, ultrasounds and range of motion tests to make sure she wasn’t developing hip dysplasia as well. Depsite being at a much higher risk due not only to the ulnar dysplasia, but also being breech, Zoey’s hips always passed the test. To this day, however, she remains extremely flexible.

After Zoey’s first birthday, the time came to schedule her surgery to separate the two webbed fingers. Come on back tomorrow and I’ll tell you all about that experience.

20 thoughts on “Ulnar Dysplasia Part 1: The Diagnosis

  1. Wow Zoeys story has been a fantastic insight into the issues facing both children and their parents concerning ulner dysplasia. My daughter has ulner dysplasia of the left hand which is almost identical to zoey though her bone is also fused on the two fingers. Have really enjoyed reading your story, thank you for sharing.

    1. Thank you so much for leaving a comment! I found so little about ulnar dysplasia online when Zoey was diagnosed; I was really hoping to find other stories in order to learn more and know what to expect for her. My hope in sharing Zoey’s story is to fulfill that same need for other parents. I’m so glad you found our story and wish all the best for you and your little girl.

  2. Hi my son Oliver was born with Ulna Dysplsia it was never picked up on scans during my pregnancy and came as a shock when he was born, at first the thought he may have Roberts syndrome and had he been diagnosed with that his life span wouldn’t be long, he luckly didn’t.

    He’s 6 now and doing great, he has full use of his left arm albeit shorter than his right it’s never stopped him doing anything. He’s going in next month for an operation on his hand to strengthen his thumb as he tucks it under his hand, his hand is also smaller.

    I’ve never found any support groups in relation to this so I’m pleased to have come across this forum.

    Shelley

    1. Shelley,

      I’m so glad that you found my blog, and even more happy to hear that Oliver is doing so well! How scary it must have been to think his diagnosis could have been so much worse. Where are you from? If you want to head over and “like” the Momsasaurus facebook page, there are several moms on there with kiddos with Ulnar Dysplasia. We’d love to have you introduce yourself on there and share a picture of you and Oliver. ๐Ÿ™‚ -Shenoah

  3. Hi thanks for the reply, we’re in Yorkshire in England, and I’m not on Facebook so cannot join the group. ๐Ÿ˜ฆ where are you? It’s so good to hear someone else in the same situation I’ve looked online for support since Oliver was born with no success. Are there a few mums on the Facebook group ? I just wondered how many people are actually effected by this as we were advised it was genetic.

    1. We’re in Seattle, Washington in the US. There is another mom from Washington, one from Spain and another from the UK whom I have all met via this blog. I know what you mean about a lack of support and information; when Zoey was first diagnosed I couldn’t find ANYTHING online. That is part of the reason I decided to share our story – I was hoping to meet other parents like you. ๐Ÿ™‚ What I have learned since is that it is genetic (although we have no family history that we know of) and happens to about 1 out of 100,000 kids (pretty rare). Our beautiful kiddos are truly unique, that’s for sure!

      1. Hello,
        My dauther is 5 months old now and our story goes the same as yours. Ultrasound did not catch the condition during 20 weeks sonar test. The delivery was very intense and learning that our daughter was missing two fingers on her left hand crushed my heart. i have since overcome my grief and counseled myself to be strong for her.
        Our baby’s forefinger and middle fingers are also webbed and unfortunately needs correction in the next month. They are webbed in a manner that is stunting growth and resulting in early signs of contracture. Despite this big scare, i can trust that God will bring her through it safely.
        By the way, i live in Seattle area too.

        1. Hello there! If you’re not already, I highly recommend seeing Dr. Steinman at Seattle Children’s Hospital. She is absolutely wonderful! So glad you found this blog. ๐Ÿ™‚

  4. I was born with ulnar dysplasia and it gets worse for your self confidence, I am twelve and it never bothered me until I hit the age of ten. I went through a really bad stage and I thought some horrible thoughts and it really helped me hearing about other peoples experience.

    1. Thank you so much for leaving us a message! I’m sorry to hear you had such a rough time, but glad you are feeling better about yourself now. I happen to think we are all born perfect, just the way we’re supposed to be. That includes you! ๐Ÿ™‚

  5. You should get your daughter to join groups and clubs, it will help her when she is older if she feels self consious and im sorry if im coming across as quite negative, I just don’t want anyone to go through what I did

    1. You are not negative, I appreciate your honesty. It is wonderful to hear from someone who has gone through what zoey will. With support from others like you, hopefully she will always feel good about herself and never feel alone. Hugs to you for being so brave to reach out to us. You must be an incredibly special person to care so much about another girl you’ve never met. ๐Ÿ™‚ merry christmas!

    1. Hi there! Congrats on your new son! Where are you guys from?

      There is not a support group for UD as far as I know. That’s part of why I started this blog – to bring together parents looking for info and support. Feel free to “like” the Momsasaurus page on facebook and post comments/questions there. I think there are about half a dozen of us with kids with UD on there now. Which is quite a lot when you think about how rare it is (1 in 100,000).

      There is The Lucky Fin Project (named after Nemo) for support for kids with limb differences (and their families). Our local children’s hospital also has a limb differences support group. We meet up with them once a year for a social event.

  6. Thank you for writing this post!! I’m ready to join the 1 in 100,000 UD group ๐Ÿ™‚ I found out a couple weeks ago that my baby has ulnar displaysia at my ultrasound. It’s such a shock to find out that your kid will be “different”. My mind has been running scenarios of how this babies life will be and how hard things will be. But reading some of your blog has calmed me and helped me realize ulnar displaysia is not that bad. I haven’t talked to a dr about this babies hand yet, but I have lots of questions I’d like to ask all those who have experienced this. Where should I ask? Thanks again for the peace of mind.

    1. Hello! Welcome to the club! Where are you from?

      Feel free to “like” the Momsasaurus page on Facebook and post questions there. There are almost a dozen of us that have come together now thanks to this blog. Which is exactly why I created it! Yay!

      Congrats on your new little bundle of joy. I hope the rest of your pregnancy is smooth sailing with a happy delivery. Keep us updated on when she is here!

      ~Shenoah

  7. Hi, my son who is now six is beginning to notice the difference in his right arm. He was born with ulnar dysplasia and has only two fingers on his right arm and no elbow joint. He has just asked if he could meet other children with an arm like his. I am worried he is becoming self concious and although we try to be positive his negative self image is breaking my heart. I would really appreciate advice on how others have dealt with this. Many thanks
    Jo from the UK x

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s