"For I know the plans I have for you," Declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future."-Jeremiah 29:11
My husband and I are just ordinary people. We never imagined we would be the chosen parents to a miracle baby. My husband is a Certified Teacher and I am a Registered Nurse. After fertility treatments, we were thrilled to learn that we were pregnant. On our 5 year wedding anniversary we went to find out if we would be having a boy or girl. We left the appointment with heartbreaking news that we thought we would never hear. We were hurt, confused and lost. We were told that our precious child would be born with an extremely rare and life threatening birth defect called Cloacal Exstrophy or O.E.I.S Complex. We were not sure if he would survive. After a complicated pregnancy, we elected to have a c-section when he reached 32 weeks. On August 20, 2010 our little gift was born. Brandon "Carter" Cline weighed 3lbs and 3oz. He was 14 1/2 inches long. We knew within a few hours of his birth that he would fight and he was going to be ok.
Carter was born with an Omphalocele (intestines and liver in a sac on the outside of his body), Exstrophy of his bladder (bladder on the outside of his body split in half and turned inside out), Imperforated Anus (requiring him to have an ostomy), and severe spinal defects (2 myelocystoceles, tethered and torqued cord). At 3 days old he had his first surgery to make his ostomy and sew his bladder halves together. He tolerated the surgery great and we took him home after a quick 4 week NICU stay. Carter was an extremely happy baby. He had his second surgery at 6 months to repair his spinal defects. His spinal defects were extremely severe and we were told he may not walk. He did not move his left leg for nearly 6 weeks after surgery. God had other plans and Carter started walking unassisted at 20 months.
Carter struggled with weight gain and only weighed 14lbs at a year old. He started suffering developmentally. He had a surgery to revise his ostomy which led to complete intestinal failure. Carter spent 7 months in and out of the hospital. He required complete IV nutrition the entire time. He spent time at Blair E. Batson Children's Hospital, Johns Hopkins Children's Center and was ultimately airlifted to Cincinnati Children's Hospital where cutting edge technology saved his life. By this point Carter had been sedated and taken for surgery more than 30 times. We left Cincinnati Children's and began a new journey. Our next goal was to get Carter healthy enough for his "BIG" surgery at Johns Hopkins Children's Center.
Carter was born with an Omphalocele (intestines and liver in a sac on the outside of his body), Exstrophy of his bladder (bladder on the outside of his body split in half and turned inside out), Imperforated Anus (requiring him to have an ostomy), and severe spinal defects (2 myelocystoceles, tethered and torqued cord). At 3 days old he had his first surgery to make his ostomy and sew his bladder halves together. He tolerated the surgery great and we took him home after a quick 4 week NICU stay. Carter was an extremely happy baby. He had his second surgery at 6 months to repair his spinal defects. His spinal defects were extremely severe and we were told he may not walk. He did not move his left leg for nearly 6 weeks after surgery. God had other plans and Carter started walking unassisted at 20 months.
Carter struggled with weight gain and only weighed 14lbs at a year old. He started suffering developmentally. He had a surgery to revise his ostomy which led to complete intestinal failure. Carter spent 7 months in and out of the hospital. He required complete IV nutrition the entire time. He spent time at Blair E. Batson Children's Hospital, Johns Hopkins Children's Center and was ultimately airlifted to Cincinnati Children's Hospital where cutting edge technology saved his life. By this point Carter had been sedated and taken for surgery more than 30 times. We left Cincinnati Children's and began a new journey. Our next goal was to get Carter healthy enough for his "BIG" surgery at Johns Hopkins Children's Center.
This surgery consisted of breaking Carter's pelvic bone in four places and putting him in external fixators and traction. They gradually bring the pelvis together and place his bladder back inside his body. The bladder then had a plate placed over it and it was screwed to either side of his pelvis. This helps the pelvis stay together and decreases the chances that his bladder will prolapse back out. This is where we are at right now. Carter must stay in traction, flat on his back for at least 8 weeks, and possibly longer if we have any setbacks. They will then remove his traction and external fixators and wrap his legs like a "Mer-man". His legs will stay wrapped for another 2 weeks. Once the traction is removed I will be able to hold him! Carter will have future surgeries, but we are praying this is the last "BIG" surgery for a while.
We thank God each day that he chose us to be Carter's parents. There have been many tough days and we have spent hours crying out to Jesus. We have watched Carter go through things parents should never have to watch their child go through. There are some people God has chosen to carry a heavier cross than others, and our sweet child is one of them. His cross is heavy, but God's love is greater. We have seen Jesus throughout Carter's life. Whether it has been in a dark hospital room trying to soothe his pain, on our knees crying for healing, or the joy we felt when Carter walked for the first time. God has never left us and we give Him all the glory. Our purpose is to show God's glory through our pain. His grace and love is sufficient. It will carry us through. As always.. To Him be the Glory!
My little girl Lana was born with mild Cerebral Palsy. The docs said a lot of things that never came to pass, and now she is healed and healthy. You cannot even tell the trauma she had to go through to get where she is. She is 11 and wears her scars proudly.
ReplyDeleteI often wonder if God sent her to me to repair me instead of her. I am so grateful to Him for everything he taught me through that journey.
You guys are in my prayers and I sit here tearing up. I can't help but think how very blessed we are to have such special children. :) xoxo
I have heard many, many people talking about and praying for Carter, but until today, I had never read your blog. Let me just say that Carter has a wonderful, gracious set of parents, and He knew what He was doing went He sent Carter to you. My heart was breaking the entire time I was reading this, I will keep Carter and your entire family in my prayers. He is a precious little boy, and God has GREAT things in store for him!
ReplyDeleteThank you for your insight into your little Carters life. Our son had OEIS as well, but didn't make it. He truly is a blessing. Please keep writing. Parents of other OEIS desperately need these stories, trust me. May God keep you strong, all of you. I had an external fixator in my leg when I was 18. Keep it the cold off of it as it hurts when it gets cold. God bless..
ReplyDeleteThank you so much for starting this blog. My daughter, a 29 weeker, also has OEIS. At birth she weighed 2lbs 8oz. She is now 1 year old and weighs 15lbs. We are in the process of scheduling her surgery now and I have to say I'm scared to death. She has come so far from where she was at. She is my little fighter. Reading your blog gives me more insight on what is to come and know that I'm not alone in this journey. Thank you so much.
ReplyDeletehttps://www.facebook.com/pages/King-Davids-Journey/317297965104957
ReplyDeleteHelo! Our son also has the OEIS complex and we would love to talk to you and your family. We could definitely use some advice and confidence! God Bless!
Hello again! I absolutely love your story. My son is 7 months old and is diagnosed with OEIS. We recently had his first major surgery in May. We just created David's blog, KingDavidsJourney.blogspot.com.
ReplyDeleteHe also has a Facebook. We want to get David's story out too to inspire people to know that anything is possible. So much has happened already and we are truly blessed. I would like to stay in contact as we go through similar surgeries. Have a blessed day!