Ulnar Dysplasia Part 2: The Surgery

For those who didn’t get the background info, take a quick peek at yesterday’s post about what ulnar dysplasia is and how Zoey got diagnosed

Putting your baby through surgery has to be one of the hardest things a parent can do. I can’t even begin to imagine the way it must feel when the surgery is for something life-threatening. The lead feeling in your stomach, the fear in your soul, the praying that it will work, that everything will be ok. I am extremely blessed and grateful that Zoey’s surgery was an elective one. It would improve her quality of life and prevent worse effects later – which is why we did it – but she would have lived without it.

There is a nerve-wracking, stomach-churning component of having to decide if your child should have surgery. Being put under anesthesia is never risk-free, and people have died from it. Zoey was very underweight – completely dropped off the bottom of the percentiles chart for a long time – and I worried about how she would do with the anesthesia. I also wondered whether the risk of the surgery was worth what she would get out of it. She would be able to move those two fingers independently, drastically increasing the function of her left hand which, at the time, was her dominant hand. And she was very, very dominant with it. If we left the fingers webbed together, eventually the second finger (what is the “middle finger” on most people) would try to grow longer than the first finger but be restricted by the webbing. Already we could see this – Zoey could not fully bend her fingers at the second joint because the length of the fingers and the joints did not match up. If we didn’t separate the fingers, she might develop further bone abnormalities and restricted use in those fingers. There was also the cosmetic component to consider although, quite frankly, that had very little bearing on our decision. It was pretty clear to us that this surgery did need to happen, but that didn’t make it any easier to do.

The surgery took place in January 2012, when Zoey was about 15 months old. The night before, I tried to get her to eat and drink as much as possible, knowing she wouldn’t be allowed breakfast in the morning. We drove her to Children’s hospital and did our best to distract her from not being allowed to eat or drink as we waited. And waited. And waited. I was already pregnant with Eleanor and slightly queasy anyway, and all this waiting was not helping.

They had me put her in a toddler’s hospital gown that – despite it’s miniscule size – was still much too large for her. They weighed and measured her. I tried to talk to her about what was happening, but how do you explain something like this to a one year old who only speaks about five words? How do you  prepare her without terrifying her? We talked to the anesthesiologist and I pleaded with him to please, remember “this is my whole life I’m putting in your hands.” When it was time, I zipped myself into a paper OR suit that went over my clothes, put on a face mask and carried her into the OR. The next five minutes are forever burned into my memory as five of the hardest, most horrible moments of my life. I carried her over and lay her on the operating table. She started to cry. The nurses put warm blankets on her and I held her arm down, trying to make it feel like a hug, as they placed a mask over her face with the gas that would put her to sleep. I sang to her and, in less than a minute, her eyes rolled back and she fell asleep. I forced myself to turn around and walk to the door. Walking away, leaving her there on that operating table with only strangers around her…I don’t think I’ve ever done anything in my life more difficult. It nearly killed me. Tears started to pour down my face before I even made it to the door and I was thankful I’d kept it together long enough that Zoey didn’t see me cry.

Hours passed in the waiting room as I sat with Zach and my mom. I found it very difficult to focus on anything. We were given a pager that would light up and vibrate whenever we were to go to the desk for information about how she was doing. It didn’t go off for several hours, until they were just about done with the surgery.  Finally, they told us that the surgery was done, they were putting the cast on, and then she would be taken to the recovery room to wake up.  The surgeon came out to talk to us and told us that the surgery went very well. She wasn’t able to get the webbing between Zoey’s fingers quite as low as normal webbing due to the placement of some blood vessels, but it was very close. I think she could tell I was barely holding it together and needed to see visible proof of the surgery being over. She pulled out her small digital camera and asked if I would like to see pictures of the fingers after the surgery. She warned that they wouldn’t be pretty due to the dried blood and black sutures, but she knew I was an ICU nurse and had seen much worse. When she showed me the pictures, it was such a disconnect. This was my baby’s hand – I would know it anywhere – but at the same time, it wasn’t. It was completely different, with the two fingers separated and spread apart. I began crying, a grateful, relieved cry, and impulsively hugged Zoey’s surgeon. All I could get out through my sobs was, “Thank you. Thank you so much.” I was thanking her for so many things with those words: for doing a good job, for knowing I needed to see those pictures, and above all, for taking such gentle, kind, compassionate care of my darling baby girl.

I was dismayed to learn that we would not be allowed to go the recovery room and be there when Zoey awoke. We were instead sent to a holding area – small rooms defined by curtains – we we again waited. Finally they brought Zoey to us in a wheeled crib. Without even thinking I rushed to pick her up and hold her. The movement was a bit too much, too fast, and caused her to throw up the apple juice and crackers they had given her after she woke. We spent another couple of hours in the holding area, getting Zoey to drink more juice, nibble on a few crackers and allowing her to just sleep in our arms.

Finally, we were sent home, taking with us her prescription oxycodone for pain and ondansetron for nausea. That night she slept in our room with us because we couldn’t bear the thought of leaving her alone all night in her own room after all she had been through that day. For the next day or two I gave Zoey pain medication at regular intervals to ensure she wouldn’t be hurting and unable to tell us. By the third day, however, it was clear that she didn’t really need that much medicine. We started just giving her ibuprofen before nap and bedtime and, within a few days, nothing at all. I was amazed at how great she was doing. Here she had this enormous mitten cast that completely covered her hand and went almost all the way up to her shoulder – on her dominant hand no less – and, for the most part, she acted as if nothing had happened, nothing had changed. My little girl is so tough, so brave. I was – and am – so proud of her.

Pop on back here tomorrow and I’ll finish the story for you: the six weeks she spent in a cast, the great reveal of her new hand when it was removed, and the follow-up afterwards.

10 thoughts on “Ulnar Dysplasia Part 2: The Surgery

  1. Hope Zoey is doing fine now. I wish the child good health.
    Thanks for visiting my site umarshams.wordpress.com, Stay connected, may be you wil like more literary stuff on my site 🙂

  2. I love your writing, Shenoah. I know where you were coming from with this. Luke had orchiopexy surgery right before his 1st birthday, and it was the most terrifying thing I have ever been through.

  3. Thank you for sharing your story. My son Jack was born with the same condition and will have surgery next month to seperate his fingers. As this is not common it is hard to find people who have gone through this.

    1. So glad you found us! Yes, it is so hard to find any support or information. Feel free to head over to the Momsasaurus facebook page and introduce yourself – there are several other mamas on there with kiddos with ulnar dysplasia. We’d love to see a picture of you and Jack! Good luck to him with the surgery and let us know how it all goes. -Shenoah

  4. Actually I think mine is a bet more advanced than Zoey which is awesome for her! I saw her picture and realized Zoey she has much more of her actual arm and hand than I have. Mine is like a hook, or chicken win, two fingers in total, webbed together. She is going to be great.

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