Christian was born with a very rare form of cleft lip and palate, known as Tessier cleft lip and palate, classifications 3, 4 and 5. There have only been about 50-60 documented cases of this type of cleft. Christian’s birth defect was caused by Amniotic Band Syndrome, but we don’t know what caused the ABS. Christian is very healthy, but he does face some challenges because of his birth defect. The cleft left Christian with a condition known as micropthalmia or “small eyes.” Christian is blind. He also has malformation to his mouth, upper teeth, sinus cavity, skull, and lips. None of this malformation is life threatening or dangerous, but it will require many reconstructive plastic surgeries. Christian eats with a feeding tube because of his birth defect. He does not have a roof to his mouth and his lips don’t work exactly how they should even after a surgery, so it’s very difficult for him to chew, control food in his mouth, and speak. He faces a number of surgeries up into his teens and possibly into adulthood. Although our guesses are just that, guesses, we estimate that he will have at least 20 to 30 surgeries in his lifetime.
Christian's type of cleft is very unique. It is obvious that Christian's reconstruction of his face, including his palate, eyes, lips, teeth, etc, will require extensive surgeries. It is also apparent that not every reconstructive surgeon will be up to the task of reconstructing such a unique and rare cleft. Finding a doctor who has the experience and knowledge to complete Christian's repairs and do them well is IMPERATIVE to us and we will not settle for just any doctor because they are near by, or because that's just who his insurance will pay for.
The last few years have been a struggle when it comes to getting Christian the care that he needs and that we think he deserves. When Christian was four months old, our local children’s hospital made a grave misdiagnosis for Christian. They misdiagnosed him with craniosynotosis. Craniosynotosis is a childhood craniofacial condition, but not one that Christian had. For many, many reasons, we were very untrusting of the diagnosis that we received. If you would like to read more about that and how we came to the conclusion to get a second opinon,
After much thought and prayer, our family decided that the best course of action for Christian would be to seek a plastic reconstructive surgeon outside of the state. We found that there just wasn’t a surgeon in state who could handle Christian’s complex issues. We were not comfortable allowing a surgeon to perform operations on him who we didn’t feel was competent to handle his case, or who we didn’t trust. In that search, we visited Shriner’s in Cincinnati, Nationwide Children’s Hospital in Columbus, and also Lebonheur Children's Hospital in Chattanooga (at the request of Christian’s insurance company). We also did research and spoke with many, many other hospitals.
After our visit with Nationwide Children’s, my husband and I decided to pursue getting Christian’s surgeries done there. The surgeons were highly skilled, the staff was wonderful and friendly, and we felt comfortable there. For a year and a half we fought the insurance company.
Christian's insurance company has a policy of not covering out of state medical care except where there is an emergency and the insured happens to be out of state when it happens (this does not apply to us) or when there are no doctors in the state who can perform the required care that the patient needs. We spent a year and a half trying to convince Christian’s insurance company that the later except pertained to our case. We were completely unsuccessful. During this time we became close friends with a family who lived in Indianapolis and had decided to visit them in August of this year. Marisa, who is now officially an honorary “Mimi” to our boys, asked if we would be interested in visit Riley Children’s Hospital while we were there. We agreed. We were already going to be close, and we also know a family whose daughter has had all of her Tessier cleft repairs done at Riley, so we were looking forward to the visit, but to be honest, we had little hope of anything ever coming of it after the fight we had already had for the past year and half.
We loved the hospital and the staff there as well, they were as kind and good to us as they could be. The surgeon was so helpful in answering all of our questions, asked many questions himself to get to know us and Christian, we got to understand his skill and find out that he has the skill and expertise to handle Christian’s case and we knew immediately that he was a kind man. But again, we didn’t have much hope that anything would work out, and didn’t even really pursue it. Our rationale was, “If his insurance company won’t approve one hospital, why would they approve a different hospital?”
On October 5th, I went in front of a judge to the final appeal hearing with Christian’s insurance company. This was our last shot. I was to appear in front of a judge, Christian’s insurance company being represented by counsel, to plead our case for the final time. Eight days later, we received our answer in the mail, The judge still said “no.” We were disheartened, disappointed, and unsure where to do next. Two days later, we received a call from Riley Children’s Hospital. Christian’s insurance company had agreed to pay for Christian’s surgeries at Riley Children’s Hospital! We didn’t know how, or why, or who, but we didn’t care at that moment. All we could do was cheer and scream and cry!!!!!
Christian’s first surgery with Riley will be November 26th, 2013. He will be undergoing a procedure to have his palate partially closed. His palate has to be closed in stages because the defect is so large, so his hard palate will be closed during this procedure. The surgery is estimated to last about 3 hours, and he will be in the hospital for about 2 days. Once Christian is discharged from the hospital, his doctor has recommended to us to stay near the hospital for 2 to 3 weeks. If problems arise, he would like us to be near the hospital so we can get Christian to his doctor quickly.
His future depends upon it. Let's help her and Christian get it. Thanks everyone!