One Month Old & A Diagnosis

6 years ago yesterday I had to say goodbye to my first child due to a miscarriage. The event rocked my world and I thought I would never recover. I still remember the raw pain I felt during that time, but after 6 months, I finally found the strength to try for another child. Since then, I had 2 beautiful, healthy daughters and we decided to try for our 3rd. We conceived Kiira the week that one of our closest friends died tragically and she was born the week of his birthday. I spent a lot of my pregnancy in fear of how I would handle a 3rd child and when we contemplated “Faith” as her middle name, I wondered if I could uphold the meaning of her name in my own life, especially after she was born with EB.

Over the past month I’ve tried my best to hold on to my faith–to believe God can and would heal Kiira. Then we found out she had dystrophic EB–not exactly the diagnosis we prayed for. Today, we got our genetic test back and found it’s recessive–again, not what we were praying for. However, when we talked to the dermatologist about the results and then met with the geneticist, I felt this odd peace and strength, which I can only attribute to God and the prayers that so many of you have prayed for my family. Both doctors feel Kiira is a mild case based on her presentation, but we still don’t understand the genetic results. Jason and I decided to get genetic testing as well to see which gene each of us carries–more out of curiosity than anything, since it doesn’t change the fact that he and I are healthy and Kiira has EB, and that won’t change.

The first mutation shows that Kiira cannot produce Collagen VII which is essential for binding the lower layers of skin to the upper layers. Unfortunately, this is not a favorable mutation, but we’re reminded that our bodies are made up of so much genetic coding, that we don’t know how our other genes will interact with this mutation and what it will end up looking like for Kiira. We know she can wear clothes and a diaper and she is eating and gaining weight. We haven’t noticed any trouble with breathing or reflux, and she seems healthy and rarely gets new blisters. We know some with RDEB are not this fortunate. I often find myself looking down the road, wanting to know what challenges we’ll face with Kiira, but everyone tells us to take it one day at a time. Stay focused on wound care, try to minimize infection, and maximize nutrition–those are our tasks for each day. We are complemented on our wound care approach (thanks to the Stanford videos and Kaiser nurses), but sometimes I still want to scream about how unfair it is that my child cannot spread her fingers, hold my hand, touch things like a normal child should be able to. On nights like tonight where she is so amped up, that it takes us nearly 2 hours instead of 1 and I’m beyond exhausted since I’m lucky to get 2 hours of sleep at a time, I just want to throw in the towel and give up. But there is her name…”Faith”. A constant reminder that I’m not alone and even though things aren’t going my way, there is someone there to walk along side me.

So when I worried about the struggles I’d face with a 3rd child while I was pregnant, I really had no clue what was in store for us. I sometimes get overwhelmed, but I really try to take one day at a time and it helps me get through the day. I’ve also tried to keep busy and get back to some of the routines I had before Kiira and that helps me keep my sanity. As we learn more about the genetic results over the upcoming weeks, I expect that we’ll have slightly more understanding of what could be in store for us and our sweet baby, but I know that I need to keep holding on to the faith that it’s not just genetics that determines Kiira’s outcome–God plays a role in all of this and He can heal Kiira.