Our Story- The Quick Version

My husband, Danny, and I met 6 years ago through mutual friends at our campus ministry. We never imagined that one day God would give us the unique privilege of parenting 2 very special children.

Let me introduce you to Bentley (2) and Marseille (1). We decided to do a home birth with Bentley due to my fear of hospitals and needles. We welcomed him into our family on February 2, 2008. We immediately noticed that he was having trouble breathing, so we were promptly transported to the hospital and received the disturbing news that they weren't sure he was going to make it.

We soon found out that Bentley was born with a hole in his lung. The doctors spent hours trying to stabilize him and weren't sure that their efforts would pay off. We were finally able to see him the next morning. It was really hard to see our small baby boy hooked up to so many machines. After a month in the NICU and many ups and downs, Bentley was discharged and we were so grateful.

His first year of life was filled with many check-ups but by God's grace Bentley progressed normally. When Bentley was 9 months old we found out we were pregnant again. We were so excited! We had no idea that in just a few months we would find out some more news. At Bentley's 1-year-old check-up, the doctor felt like Bentley's liver was enlarged. The doctor wanted us to reschedule Bentley's 1-year-old check-up with his pediatrician. The pediatrician ordered an ultrasound and the results were less than pleasant. Bentley's kidneys were enlarged and had microscopic cysts all over them. His umbilical cord vein had reopened and was draining blood from his liver.

We ended up meeting with a gastroenterologist and nephrologist right away. Bentley's blood work for his kidney function was stable. We told the nephrologist that we were expecting and he told us to make sure we followed the baby's progress closely.

We soon found out that we were having a girl and we were very excited. Marseille's pregnancy was filled with many appointments. Appointments for her and for Bentley. Thankfully, Marseille's ultrasounds came back normal every time.

Shortly after Marseille's birth, which was quick and normal, we had genetic testing done on Bentley, Danny, and myself. It came back telling us that Bentley has Recessive Polycystic Kidney Disease, and that Danny and I both carry the recessive gene for this disease, which means there is a 1 in 4 (25%) chance that each one of our children will get the disease. Not a month later at Marseille's 6 month well check, the pediatrician could feel her kidneys suggesting that they might be enlarged. Given the family history, she ordered an ultrasound. As soon as the technician started the ultrasound, I saw the cysts and that Marseille's liver wasn't smooth. The tech wouldn't give me any details, but I already knew what the diagnosis was going to be. Sure enough, our baby girl was diagnosed with PKD as well.

Despite the fact that it is hard to have children who have diseases, we see the sovereignty of God in our situation. We see how God has worked from the beginning. God spared Bentley's life at birth because 30% of babies with PKD die at birth. We found out that we were pregnant and having a girl before we found out that Bentley had PKD. What a kindness! We have boy and a girl, which is great considering we won't be having anymore children given the risk. Danny and I found out our genetic testing results before Marseille's ultrasound, which softened the blow of her having PKD, as well.

We are fearfully and wonderfully made--believe it or not this disease has made that more real to us than ever. God created 2 little genes in 2 different people that would at some point come together and activate this disease...that is amazing!

What does it look like for daily life? Well, we take it one day at a time. There is no "cure" for the disease.Transplants of the kidney and liver is the closest fix. So, both children are monitored by a nephrologist, gastroenterologist, bood work, and ultrasounds. They are looking for kidney failure because nothing can be done medically until the kidneys begin to fail. You may think that sounds awful, but really none of us are guaranteed tomorrow. Therefore, we should all take it one day at a time, thanking God that he has given us one more day together. God hasn't given me a peace about researching the disease beyond what I need to know, probably because I am prone to worry. “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” Matthew 6.34 If I know too much I will worry away what precious time God has given me with them TODAY!

It would be wonderful if Bentley and Marseille could be healed on this earth through a miracle or medical intervention. But, what is most important to us is their salvation. Our deepest desire is for God to save their souls, because He will heal them instantly in Heaven for eternity. “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelation 21.4. Praise God that we have hope and can stand on His promises!