mr. justus

Many of you already know about Justus’ story. For those of you who do not know, or who would like to know more, here it is.

After trying for years we finally were able to get pregnant in 2013. I had a very normal, easy pregnancy. At week 20 I went in for my routine ultrasound, we were having a boy, but I left disappointed because the pictures turned out so poorly compared to others I have seen. I was just so excited to see my boy, and as you all know I am obsessed with photographs. The next day I received a call from the ultrasound tech wanting to take additional pictures because they turned out so bad. I wondered if anything was wrong, but they assured me that it was just bad imagining. Knowing that the images weren’t the best I was glad to get a second shot at better images. I put the worry out of my mind. The second appointment produced great images, and we left happy to have received them without even having to ask for a reshoot.

The next day, Thursday at 1:30 in the afternoon we had just finished our staff meeting at RJG when my doctor called. She informed me that my baby had fibular hemimelia. My son was completely missing his fibula in his left leg. I kept it together while talking to Dr. Hogenson. But when I dialed to call Ben and let him know that his son was missing a leg bone, I couldn’t function. I could barely utter the words. All I could think about was how… how did this happen? What did I do wrong? This doesn’t happen to women who take their vitamins, eat well, and have a good doctor. This happens in third world countries. How could this happen to me? To my baby.

That night I still had a job to do. It was the first night of the Gala’s for the Arctic Winter Games and I was the ceremony manger. I went and made sure everything was going as scheduled. As time allowed I googled away to research the new term “fibular hemimelia”. I soon found out that it happens in 1 in 50,000 (some sights say 1 in 100,000) people. They don’t know what causes it. Researchers know it happens in the first 5 - 7 weeks of development. I was able to find a Facebook support group and blogs of other families who have gone through this. I poured through the pictures and videos of other children wondering what my child will be missing and what he will look like. The second night of the Gala’s I had one of those moments that brought me back  outside of myself. I was back stage with all of the kids getting ready. There was a girl there who had the most amazing voice, we started talking and I found out she had saved up all she had so she could attend the AWGs and perform. She had problems of her own. It was that simple moment of listening to someone else’s story that I remembered. We all have stories, we all have struggles, and what I am going through and what Justus will go through will just be a part of our story, it will be our struggle and it will be OK.

The next 20 weeks of pregnancy I went to see a specialist in Anchorage several times to check on Justus’ development. I consulted with a doctor on the east coast for leg lengthening and interviewed prosthesis designers in Anchorage. I researched like crazy what all the options were. It was important to me to research all that I could before he came, so that when he did arrive I could enjoy my baby and not trying to figure out what everything meant for the journey ahead.

Emotionally I was up and down for a while. I grieved for the loss of my child’s leg and prayed that God would not take my baby away also. It was hard enough to loose just a leg, I could not imagine the grief of loosing my child completely. It made me realize how fortunate we are to have so many babies that develop perfectly, to have so many babies live to see the world with all those connections happening within the womb in perfect order. It also brought to mind all of my friends who have lost their children over the years and it put a whole new light on their grief.

Justus popped out (or rather was cut out) August 4th, 2014. He was the cutest baby I had ever seen. His legs were indeed different sizes, but he made it out with all ten toes for me to enjoy his first year of life. He had his first X-ray that first day.

One month after he was born we went to see a specialist in Anchorage. I didn’t really learn anything new, but he referred us to a doctor at Seattle Children’s Hospital. In March we went to Anchorage to meet with the two doctors. We decided on Syme’s amputation and prosthesis for treatment. 

A lot of people say, “He has a foot. Why are you going to take it?” The best analogy I have is that it’s like a car with perfect wheels, but a broken axel. It may look nice, but it’s not going to get you very far. Justus is completely missing his fibula. His tibia is short and bent. His femur is slightly shorter. His knee is loose, and his ankle is not formed correctly. His first surgery will be next week, July 23rd. 

I am totally up for any questions that you have. I will be keeping people posted through Facebook and Instagram.   

The photos below are from Justus' appointment in March.